@Article{info:doi/10.2196/56586,
author="Tan, Orejana Josephine Rose
and Neal, P. David
and Vilmen, Maria
and Boersma, Petra
and Ettema, P. Teake
and Gobbens, J. Robbert J.
and Sikkes, M. Sietske A.
and Dr{\"o}es, Rose-Marie",
title="A Digital Photo Activity Intervention for Nursing Home Residents With Dementia and Their Carers: Mixed Methods Process Evaluation",
journal="JMIR Form Res",
year="2025",
month="Apr",
day="16",
volume="9",
pages="e56586",
keywords="dementia",
keywords="psychosocial interventions",
keywords="nursing home",
keywords="process evaluation",
keywords="social interaction",
keywords="photos",
keywords="art",
abstract="Background: Within the framework of a randomized controlled trial investigating the impact of a digital, psychosocial photo activity intervention for residents living with dementia in nursing homes and their informal and formal carers, a process evaluation was conducted to determine factors that affected the implementation of the intervention and potentially influenced the intervention outcomes. Objective: By tracing facilitators and barriers to implementation, the study also aimed to inform future implementation of the photo activity intervention. Methods: Following Medical Research Council guidance, mixed methods were used to investigate context, implementation, and mechanism-of-impact factors during the photo activity intervention via the Fotoscope web application versus a general conversation activity (control). Google Analytics was set up to gain insight into how the Fotoscope web application was used in practice. For quantitative data, descriptive statistics were calculated and differences between groups tested. For qualitative data, thematic analysis was performed. Results: In total, 163 semistructured interviews were conducted with residents (photo activity group: n=29, 17.8\%; control: n=29, 17.8\%), formal carers (photo activity group: n=23, 14.1\%; control: n=27, 16.6\%), and informal carers (photo activity group: n=28, 17.2\%; control: n=27, 16.6\%). Regarding contextual factors, a minority of formal carers in both groups (photo activity group: 4/18, 22\%; control: 9/24, 38\%) mentioned time and workload as barriers to implementing the intervention. Regarding implementation, 86\% (25/29) of the residents in the intervention group felt that the digital photo activity worked well on a tablet. Informal carers from both groups wanted more intervention updates from formal carers. The majority of formal carers from both groups were satisfied with how the training and activities were implemented. Regarding the mechanisms of impact, residents in the photo activity group (27/29, 93\%) felt significantly more positive about the conversations with their carer (U=533.0, z=2.865, r=0.39; P=.004). Formal carers in the photo activity group (20/23, 87\%) got to know the resident better (U=390.5, z=2.114, r=0.302; P=.04) compared to the formal carers in the control group (21/27, 78\%). Formal carers in the photo activity group (23/50, 46\%) gave a significantly higher rating to the digital photo activity as a way of getting to know the resident living with dementia better (median 9.00, IQR 7-9; U=419.0, z=2.169, r=0.307; P=.03) compared to formal carers in the control group (27/50, 54\%; median 8.00, IQR 6-8). Finally, the majority of formal carers in the photo activity group (14/18, 78\%) agreed that the Fotoscope app can be used as part of care activities in the nursing home. Conclusions: The work invested by formal carers in implementing the photo activity did not seem to differ greatly compared to implementing a general conversation activity, suggesting that the digital photo activity, as an easy-to-implement and enjoyable intervention, could be widely implemented and disseminated in nursing homes. International Registered Report Identifier (IRRID): RR2-https://doi.org/10.1186/s12877-021-02632-w ",
doi="10.2196/56586",
url="https://formative.jmir.org/2025/1/e56586"
}


@Article{info:doi/10.2196/59942,
author="Biernetzky, A. Olga
and Thyrian, Ren{\'e} Jochen
and Boekholt, Melanie
and Berndt, Matthias
and Hoffmann, Wolfgang
and Teipel, J. Stefan
and Kilimann, Ingo",
title="Identifying Unmet Needs of Informal Dementia Caregivers in Clinical Practice: User-Centered Development of a Digital Assessment Tool",
journal="JMIR Aging",
year="2025",
month="Apr",
day="7",
volume="8",
pages="e59942",
keywords="unmet needs",
keywords="assessment development",
keywords="family caregivers of people with dementia",
keywords="dementia",
keywords="need",
keywords="Alzheimer",
keywords="self-guided",
keywords="self-reported",
keywords="caregiver",
keywords="informal care",
keywords="spousal care",
keywords="interview",
keywords="qualitative",
keywords="thematic",
keywords="usability",
keywords="mHealth",
keywords="tablet",
keywords="self-completed",
keywords="aging",
keywords="patient care",
keywords="health interventions",
keywords="care giver",
keywords="digital health",
keywords="ehealth",
keywords="digital assessment",
keywords="memory",
abstract="Background: Despite the increasing interventions to support family caregivers of people with dementia, service planning and delivery is still not effective. Objective: Our study aimed to develop a digitally-supported needs assessment tool for family caregivers of people with dementia that is feasible, time-efficient, understood by users, and can be self-completed in the primary care setting. Methods: The development of the unmet needs assessment tool was part of a cluster-randomized controlled trial examining the effectiveness of a digitally supported care management programme to reduce unmet needs of family caregivers of people with dementia (GAIN [Gesund Angeh{\"o}rige Pflegen]) and was conducted in 3 phases. Using an iterative participatory approach with informal caregivers, health care professionals including general practitioners, neurologists, psychologists, psychiatrists, nurses, and Alzheimer Society representatives, we developed a digital self-completion unmet needs assessment tool focusing on informal caregivers' biopsychosocial health und quality of life in connection to their caregiver responsibilities. Data were collected through group discussions, written feedback, protocols, think-aloud protocols, and interviews, and analyzed thematically. Results: Data from 27 caregivers, including caregivers of people with dementia (n=18), health care professionals (n=7), and Alzheimer Society representatives (n=2) were collected. Thematic analysis identified 2 main themes: content of the assessment tool and usability and handling of the digital tablet-based assessment tool. The feedback provided by the stakeholders led to new aspects and changes to make the tool comprehensive, easy to read, and easy to handle. The overall mean completion time was reduced from the initial 37 minutes to 18 minutes, which renders the assessment tool fit to be self-completed in waiting rooms of primary care practices or other settings. Conclusions: The input of the 3 stakeholder groups has supported the development of the assessment tool ensuring that all aspects considered important were covered and understood and the completion of the assessment procedure was time-efficient and practically feasible. Further validation of the assessment tool will be performed with the data generated as part of the GAIN trial. Trial Registration: ClinicalTrials.gov NCT04037501; https://clinicaltrials.gov/study/NCT04037501 ",
doi="10.2196/59942",
url="https://aging.jmir.org/2025/1/e59942"
}


@Article{info:doi/10.2196/67545,
author="Han, Areum
and Oster, Robert
and Yuen, Hon
and Jenkins, Jeremy
and Hawkins, Jessica
and Edwards, Lauren",
title="Videoconference-Delivered Acceptance and Commitment Therapy for Family Caregivers of People With Dementia: Pilot Randomized Controlled Trial",
journal="JMIR Form Res",
year="2025",
month="Mar",
day="31",
volume="9",
pages="e67545",
keywords="acceptance and commitment therapy",
keywords="Alzheimer disease",
keywords="caregivers",
keywords="dementia",
keywords="depression",
keywords="web-based intervention",
keywords="quality of life",
keywords="randomized controlled trial",
keywords="stress",
keywords="videoconferencing",
abstract="Background: Family caregivers of individuals with dementia face significant mental health challenges. Acceptance and commitment therapy (ACT) has emerged as a promising intervention for improving these caregivers' mental health. While various delivery modes of ACT have been explored, there is a need for evidence on the efficacy of videoconference-delivered ACT programs for this population. Objective: This pilot randomized controlled trial, conducted in the United States, aims to assess the effects of a videoconference-delivered, therapist-guided ACT program on reducing depressive symptoms and improving other mental health outcomes among family caregivers with depression who give care to individuals with dementia, compared to a control group that received psychoeducation materials only. Methods: This 2-arm, parallel-group pilot randomized controlled trial randomly assigned 33 family caregivers to either a 10-week videoconference-delivered ACT program (n=16, 48\%) or a control group that received psychoeducation materials alone (n=17, 52\%). Depressive symptoms (primary outcome) were measured using the Patient Health Questionnaire-9. Secondary outcomes included anxiety, stress, psychological quality of life (QoL), caregiver burden, predeath grief, guilt, and ACT process measures. Outcomes were assessed in the pretest, posttest (10-12 weeks after pretest), and a 3-month follow-up (3 months after posttest, approximately 5-6 months after pretest). An intent-to-treat approach was used for all outcome analyses. Linear mixed-effects models for repeated measures were used to analyze outcomes. Results: The ACT group reported significantly greater improvements in stress (P=.043) and psychological QoL (P=.014) in the posttest compared to the control group. Within the ACT group, participants experienced a significant decrease in depressive symptoms, with a mean (SE) change of --6.09 (1.16) points (95\% CI --8.42 to --3.76; P<.001) in the posttest and --6.71 (1.45) points (95\% CI --9.63 to --3.81; P<.001) in the 3-month follow-up. These changes exceed the estimated minimal clinically important difference on the Patient Health Questionnaire-9. In addition, the ACT group reported significant improvements in anxiety, stress, psychological QoL, caregiver burden, predeath grief, guilt, values-driven action, and experiential avoidance at both posttest and 3-month follow-up. A sensitivity analysis, excluding 1 participant with near-outlier data, revealed statistically significant between-group differences in depressive symptoms at posttest (P=.037); stress at posttest (P<.001) and in 3-month follow-up (P=.001); psychological QoL at posttest (P<.001); caregiver burden at posttest (P=.003) and in 3-month follow-up (P=.003); predeath grief in 3-month follow-up (P=.031); and values-driven action at posttest (P=.032). Conclusions: The videoconference-delivered ACT program showed promise in improving mental health outcomes and ACT processes among family caregivers with depression who give care to individuals with dementia. Future studies should aim to replicate these findings with larger, more diverse caregiver populations and explore the long-term efficacy of videoconference-delivered ACT programs. Trial Registration: ClinicalTrials.gov NCT05043441; https://clinicaltrials.gov/study/NCT05043441 ",
doi="10.2196/67545",
url="https://formative.jmir.org/2025/1/e67545"
}


@Article{info:doi/10.2196/68061,
author="Lee, Man-Sin Maggie
and Yeoh, Eng-Kiong
and Wong, Lai-Yi Eliza",
title="Employers' Perspectives of Caregiver-Friendly Workplace Policies for Caregiver-Employees Caring for Older Adults in Hong Kong: Thematic Analysis",
journal="JMIR Aging",
year="2025",
month="Mar",
day="31",
volume="8",
pages="e68061",
keywords="caregiver",
keywords="aging",
keywords="burnout",
keywords="stress",
keywords="mental health",
keywords="employees",
abstract="Background: Caregiver-friendly workplace policies (CFWPs) are rare in Hong Kong. With Hong Kong facing a ``silver tsunami'' in the near future, it is important to understand the need for such policies and the views of employers for future facilitation. Objective: This study aimed to identify the support that is currently provided or that could be provided to caregiver-employees (CEs) caring for older adults in Hong Kong and assess the challenge and facilitative support for employers to adopt CFWPs in the specific context of Hong Kong. Methods: A qualitative research design with semistructured individual in-depth interviews with employers from Hong Kong was adopted for this study. A purposive snowball sampling method was used to recruit participants from the 7 primary industries mentioned in the Hong Kong census and from all 3 employer types (private, public, and nongovernmental organizations), which allowed the inclusion of participants sensitized to the idea and potential of CFWPs. Thematic framework analysis was used to evaluate the data collected during the interviews. Results: We interviewed 17 employers and managers from 7 major industries in Hong Kong (2.5 to 120,000 employees). There were 4 (24\%) male and 13 (76\%) female participants, and the participant age ranged from 30 to 50 years. All participants held managerial positions at the time of the interview. Of the 17 participants, 13 were from private companies, 2 were from public institutions, and 2 were from nongovernmental organizations. Four of the companies had a global presence. Four main themes were identified: (1) current support and potential support for CEs (which was limited to discretionary annual leave and unpaid leave when annual leave was exhausted), (2) challenges in adopting CFWPs, (3) facilitating support for adopting CFWPs, and (4) incentives for adopting CFWPs. The participants rated information and resources for CEs (mean 8.56, SD 0.37), bereavement leave (mean 8.47, SD 0.63), flexible working hours (mean 8.32, SD 0.48), and caregiver-inclusive corporate culture (mean 8.32, SD 0.48) as essential CFWPs for CEs in Hong Kong. Conclusions: While several studies have reported the types of CFWPs and their impacts on CEs, stakeholders' perspectives on CFWPs have been rarely investigated. This study found that although employers consider CFWPs as necessary and see them as a catalyst for a long-term win-win situation, the current support for CEs is discretionary and industry-specific. Government leadership is critical for formulating, piloting, and implementing CFWPs to create a friendly environment that encourages disclosure with trust and respect across industrial sectors in Hong Kong. This study identified the current unmet needs and demands of CEs from the employer's perspective, the barriers to large-scale adoption of CFWPs, and the path forward to inform further discourse and policy formulation in Hong Kong. ",
doi="10.2196/68061",
url="https://aging.jmir.org/2025/1/e68061"
}


@Article{info:doi/10.2196/66338,
author="Keefe, M. Janice
and McCloskey, Rose
and Hodgins, J. Marilyn
and McArthur, Caitlin
and MacKenzie, Adrian
and Weeks, E. Lori
and Estabrooks, A. Carole",
title="Examining Quality of Work Life in Atlantic Canadian Long-Term Care Homes: Protocol for a Cross-Sectional Survey Study",
journal="JMIR Res Protoc",
year="2025",
month="Mar",
day="31",
volume="14",
pages="e66338",
keywords="residential long-term care",
keywords="care staff",
keywords="Atlantic Canada",
keywords="quality of work life",
keywords="work environment",
keywords="health and well-being",
abstract="Background: The Canadian long-term care (LTC) workforce cares for increasingly complex residents. With greater care needs come greater demands. Despite this, LTC staffing and resources are largely unchanged and underresearched over the last decade. The Atlantic provinces are home to the oldest population in Canada, indicating a high need for LTC. The health and well-being of the LTC workforce are critical components of care quality, yet only in Western Canada are such data routinely and systematically collected. Translating Research in Elder Care is a 2-decade research program studying the LTC work environment and has found strong links between the working conditions of LTC staff and resident outcomes. We draw upon their success to generate the evidence needed to understand, support, and manage the LTC workforce in Canada's four Atlantic provinces. Objective: This study aims (1) to assess the quality of work life among staff in LTC homes in Atlantic Canada; (2) to examine the effects of the work environment on the quality of work life; and (3) to build capacity for research in the LTC sector in Atlantic Canada among knowledge users, researchers, and trainees. The objective of this paper is to describe the approach needed to examine the quality of work life and health of care staff in LTC homes. Methods: Stratified random sampling will be used to recruit homes in Atlantic Canada. The sampling frame was designed to recruit 25\% of the LTC homes in each of the 4 provinces with proportional representation by size; ownership model; and, if applicable, region or language. Key outcome variables include measures of mental health and well-being, quality of work life, intention to leave, workplace context, and missed or rushed care. Primary data will be obtained through structured interviews with care aides and web-based surveys from registered nurses, licensed practical nurses, managers, and allied health providers. Eligible participants were from an LTC home with at least 25 residents, 90\% of whom were aged 65 years or older, and had worked in the home for at least 3 months. Multivariate analyses include regression analysis for explaining predictors of quality of work-life outcomes and multilevel modeling for more complex relationships of staff outcomes by provinces and LTC home characteristics. Results: Data collection and cleaning are complete as of October 2024 (N=2305). Care aides (n=1338), nurses (n=724), allied health providers (n=154), and managers (n=89) from 53 homes make up the sample. Data analysis is ongoing. Initially, individual reports will present descriptive data for each participating LTC home. Concurrent analysis is planned for publication in peer-reviewed journals. Conclusions: This peer-reviewed research protocol lays the foundation for a comprehensive analysis of the effects of the work environment on the quality of work life of LTC staff in Atlantic Canada. International Registered Report Identifier (IRRID): DERR1-10.2196/66338 ",
doi="10.2196/66338",
url="https://www.researchprotocols.org/2025/1/e66338"
}


@Article{info:doi/10.2196/66975,
author="Wright, D. Kathy
and Richards Adams, K. Ingrid
and Helsabeck, P. Nathan
and Rose, M. Karen
and Moss, O. Karen
and Nemati, Donya
and Palmer, Navia
and Kim, Bohyun
and Pokhrel Bhattarai, Sunita
and Nguyen, Christopher
and Addison, Daniel
and Klatt, D. Maryanna",
title="Stress and Hypertension Among African American Female Family Caregivers of Persons Living With Alzheimer Disease and Related Dementias: Protocol for a Pilot Internet-Based Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2025",
month="Mar",
day="27",
volume="14",
pages="e66975",
keywords="African American women",
keywords="high blood pressure",
keywords="stress reactivity and resilience",
keywords="caregiving",
keywords="hypertension",
keywords="stress",
keywords="Alzheimer disease",
keywords="dementia",
keywords="lifestyle and healthy self-care behaviors",
abstract="Background: Caregivers of persons with Alzheimer disease and related dementias (ADRD) neglect their health, including by ignoring stress levels. African American women are vulnerable and susceptible to hypertension. Chronic caregiving stress and hypertension place them at high risk for cardiovascular disease. Addressing stress reactivity or resilience is vital in lessening their caregiving stress, enhancing their quality of life (QOL), and fostering healthy blood pressure (BP) self-care behaviors. Objective: This pilot study aims to investigate the feasibility and acceptability of implementing the Mindfulness in Motion (MIM) plus the Dietary Approaches to Stop Hypertension (DASH) intervention in this population and to evaluate its effect on ADRD caregivers' stress and QOL. Additionally, it explores the mediation of stress reactivity or resilience between interventions and self-care behaviors. Methods: A small randomized controlled trial pilot study will recruit 28 African American or Black female caregivers aged 40 years diagnosed with hypertension and on an antihypertensive medication. Participants will be randomly assigned to either the MIM DASH or the Alzheimer's Association caregiver training group (attention control). Trained facilitators will deliver both interventions over 8 weeks through 1-hour, group, internet-based sessions, via video or telephone. After completion, both groups will receive coaching calls over 9 months, beginning with 8 weekly calls followed by 4 monthly calls to encourage use of the educational materials. Primary outcome measures include feasibility (recruitment and retention) and acceptability (attendance). Secondary measures assess caregiver stress (Perceived Stress Scale), QOL, and self-care behaviors (Food Frequency Questionnaire and self-reported physical activity). Data collection occurs at baseline, 3 months, and 9 months. Quantitative data will be analyzed using descriptive statistics, CIs, and mediation models. Results: This study was approved by the institutional review board in April 2022 and funded in May 2022. The first data were collected in January 2023, and the last data were collected in September 2024. The completion of all aims' data analysis is anticipated in spring 2025. The participants' mean age was 62.4 (SD 7.98) years, with a mean baseline systolic BP of 128 (SD 19) mm Hg and diastolic BP of 79 (SD 10) mm Hg. Participants reported that MIM DASH was acceptable (at a mean score of 59.08, SD 7.38, compared to 60.83, SD 5.56 for caregiver training). Regarding feasibility, as reflected in attendance, MIM DASH participants had a mean attendance of 6.3 (SD 2.3) sessions, and the caregiver training group had 4.9 (SD 2.9) sessions. Conclusions: This study's findings demonstrate the feasibility of conducting an internet-based intervention (MIM DASH) for African American women with hypertension who also care for families living with ADRD. These results will inform the design of a larger randomized controlled trial to evaluate the intervention's efficacy and scalability further. Trial Registration: ClinicalTrials.gov NCT05721482; https://clinicaltrials.gov/study/NCT05721482 International Registered Report Identifier (IRRID): DERR1-10.2196/66975 ",
doi="10.2196/66975",
url="https://www.researchprotocols.org/2025/1/e66975"
}


@Article{info:doi/10.2196/67219,
author="Bakas, Tamilyn
and Miller, Elaine
and Sucharew, Heidi
and Kreitzer, Natalie
and Israel, Jahmeel
and Rota, Matthew
and Harnett, Brett
and Dunning, Kari
and Jones, Holly
and McCarthy, Michael
and Brehm, Bonnie
and Austin, K. Joan
and Mitchell, H. Pamela",
title="Examining the Efficacy of the Telehealth Assessment and Skill-Building Kit (TASK III) Intervention for Stroke Caregivers: Protocol for a Randomized Controlled Clinical Trial",
journal="JMIR Res Protoc",
year="2025",
month="Mar",
day="25",
volume="14",
pages="e67219",
keywords="stroke",
keywords="family caregivers",
keywords="depressive symptoms",
keywords="health-related quality of life",
keywords="clinical trial",
keywords="intervention study",
keywords="protocol",
keywords="nursing",
abstract="Background: Stroke is a leading cause of serious, long-term disability and has a sudden onset. Upon discharge to the home setting, families are thrust into providing care, often without sufficient training from health care providers. Aligned with current patient and caregiver guidelines, the Telehealth Assessment and Skill-Building Kit (TASK III) is a nurse-led intervention designed to empower caregivers to address their own needs and those of the survivor using innovative skill-building strategies. Objective: This study aims to test the short-term (immediately after the intervention at 8 wk) and long-term (12, 24, and 52 wk) efficacy of the TASK III intervention, compared with an information, support, and referral (ISR) group, to improve caregiver life changes (ie, changes in physical health, physical functioning, emotional well-being, and general health) as a result of providing care. Methods: A randomized controlled clinical trial design will be used with baseline data collection from 296 family caregivers by telephone after the stroke survivor is discharged home. Caregivers randomly assigned to the ISR group (n=148, 50\%) will receive information from the American Heart Association about stroke family caregiving. Caregivers randomly assigned to the TASK III group (n=148, 50\%) will receive a TASK III resource guide and information from the American Heart Association. Both groups will receive 8 weekly calls from a nurse, with a booster call a month later. Outcomes will be assessed by blinded data collectors at 8, 12, 24, and 52 weeks. The primary outcome (at 8 wk) is caregiver life changes measured by the Bakas Caregiving Outcomes Scale. Secondary outcomes are depressive symptoms; other symptoms (eg, stress, fatigue, sleep, pain, and shortness of breath); unhealthy days; diet; exercise; and self-reported health care use. Mediators are task difficulty, threat appraisal, and self-efficacy. Program evaluation outcomes (satisfaction and technology ratings) will also be analyzed. Results: The trial was registered on March 10, 2022. Enrollment and random assignment of the first participant was on November 30, 2022, with an anticipated completion of recruitment by November 30, 2025. Completion of the primary end point data analysis is anticipated by August 31, 2026, with results expected to be reported on ClinicalTrials.gov by April 1, 2027. As of October 9, 2024, a total of 198 (66.9\% of the proposed total sample of 296) family caregivers have been enrolled and randomly assigned to the TASK III group (n=98, 49.5\%) or the ISR group (n=100, 50.5\%). The last update was performed on January 25, 2024. Conclusions: If the TASK III intervention is shown to be efficacious in the proposed randomized controlled clinical trial, our next goal will be to translate TASK III into ongoing stroke systems of care, providing a tremendous public health impact. Trial Registration: ClinicalTrials.gov NCT05304078; https://clinicaltrials.gov/study/NCT05304078 International Registered Report Identifier (IRRID): DERR1-10.2196/67219 ",
doi="10.2196/67219",
url="https://www.researchprotocols.org/2025/1/e67219",
url="http://www.ncbi.nlm.nih.gov/pubmed/39937971"
}


@Article{info:doi/10.2196/64074,
author="van Gaans-Riteco, Dani{\"e}lle
and Stoop, Annerieke
and Wouters, Eveline",
title="Values of Stakeholders Involved in Applying Surveillance Technology for People With Dementia in Nursing Homes: Scoping Review",
journal="JMIR Aging",
year="2025",
month="Mar",
day="20",
volume="8",
pages="e64074",
keywords="surveillance technology",
keywords="nursing home",
keywords="stakeholders",
keywords="values",
keywords="dementia",
keywords="safety",
abstract="Background: Due to the progressive nature of dementia, concerns about the safety of nursing home residents are frequently raised. Surveillance technology, enabling visual and auditory monitoring, is often seen as a solution for ensuring safe and efficient care. However, tailoring surveillance technology to individual needs is challenging due to the complex and dynamic care environment involving multiple formal and informal stakeholders, each with unique perspectives. Objective: This study aims to explore the scientific literature on the perspectives and values of stakeholders involved in applying surveillance technology for people with dementia in nursing homes. Methods: We conducted a scoping review and systematically searched 5 scientific databases. We identified 31 articles published between 2005 and 2024. Stakeholder characteristics were extracted and synthesized according to the theory of basic human values by Schwartz. Results: In total, 12 stakeholder groups were identified, with nursing staff, residents, and informal caregivers being the most frequently mentioned. Among stakeholder groups close to residents, values related to benevolence, security, conformity, and tradition were most commonly addressed. Furthermore, values such as self-direction, power, and achievement seemed important to most stakeholder groups. Conclusions: Several stakeholder groups emphasized the importance of being and feeling involved in the application of surveillance technologies. In addition, they acknowledged the necessity of paying attention to stakeholders' perspectives and values. Across these stakeholder groups, values related to benevolence, security, and self-direction were represented, although various stakeholders assigned different meanings to these values. Awareness of stakeholders' perspectives demands a willingness to acknowledge each other's values and bridge differences. ",
doi="10.2196/64074",
url="https://aging.jmir.org/2025/1/e64074",
url="http://www.ncbi.nlm.nih.gov/pubmed/39899267"
}


@Article{info:doi/10.2196/63572,
author="Walzer, Stefan
and Sch{\"o}n, Isabel
and Pfeil, Johanna
and Merz, Nicola
and Marx, Helga
and Ziegler, Sven
and Kunze, Christophe",
title="Experiences With an In-Bed Real-Time Motion Monitoring System on a Geriatric Ward: Mixed Methods Study",
journal="JMIR Form Res",
year="2025",
month="Mar",
day="4",
volume="9",
pages="e63572",
keywords="nurses",
keywords="geriatric patients",
keywords="cognitive impairment",
keywords="technology",
keywords="fall prevention",
keywords="hospital",
keywords="mixed methods",
keywords="patient",
keywords="learning process",
keywords="assessment",
keywords="autonomy",
keywords="impairment",
keywords="real-time motion",
keywords="university",
keywords="geriatric ward",
keywords="survey",
keywords="anxiety",
keywords="willingness",
keywords="patient privacy",
keywords="effectiveness",
keywords="monitoring system",
keywords="health care practice",
abstract="Background: Older adults now make up about two-thirds of hospital admissions, with up to 50\% experiencing cognitive impairments such as dementia. These patients often struggle with adherence to care plans and maintaining regular day or night cycles, presenting challenges for nurses. Hospitals are typically unprepared to manage this patient population, resulting in increased nurse workload and challenges like managing motor agitation, which can lead to falls or accidental removal of medical devices. Objective: This study aimed to (1) assess how an in-bed real-time motion monitoring system (IRMS) impacts nurses' perceptions of physical and mental stress, (2) evaluate the IRMS's effect on the care process, (3) explore ethical implications like patient autonomy and privacy, and (4) understand how nurses acquire knowledge about the technology and how this affects their assessment of the IRMS. Methods: The IRMS, which provides real-time motion monitoring and bed edge or exit information, was implemented in the geriatric ward of a university medical center. The study followed a monocentric, explorative evaluation design using a mixed methods approach. It lasted 24 weeks and had two phases. In Phase 0 (6 weeks), patients received standard care. In Phase 1 (18 weeks), the IRMS was introduced. Initial data were gathered through focus groups and participant observations during manufacturer training sessions. At the end of the intervention, a survey, a second focus group, and an interview were conducted to capture nurses' experiences. The study follows the Good Reporting of a Mixed Method Study (GRAMMS) checklist for reporting. Results: Initial training sessions with 12 participants (10 nurses and 2 physiotherapists) showed varying levels of engagement, with the second session demonstrating more optimism and interprofessional collaboration. A total of 10 questionnaires were completed (10/21, 48\%). Survey results showed that 80\% (8/10) of nurses found the IRMS valuable for assessing the quality of work, and 90\% (9/10) were willing to continue using it. The system was regarded as reliable for monitoring bed edge and exit events. Usability was positively rated, with minimal concerns about documentation burden. Focus group discussions (n=3 per session) indicated that nurses viewed the system as reliable and appreciated its role in reducing anxiety related to fall prevention. However, concerns about patient privacy and monitoring were raised. Nurses expressed a willingness to continue using the IRMS but reaffirmed their ability to care for patients without it. Conclusions: Nurses had a generally positive attitude toward the IRMS, recognizing its benefits, particularly for nighttime monitoring. Although its effectiveness in preventing falls remains inconclusive, the system helps reduce nurses' fear of falls and enhances their responsiveness. The study highlights the broader impact of the IRMS beyond fall prevention and stresses the importance of thoughtful integration into health care practice. ",
doi="10.2196/63572",
url="https://formative.jmir.org/2025/1/e63572",
url="http://www.ncbi.nlm.nih.gov/pubmed/40053780"
}


@Article{info:doi/10.2196/54847,
author="Huang, Mengxia Nova
and Wong, Ze Liang
and Ho, S. Shirley
and Timothy, Bryan",
title="Understanding Challenges and Emotions of Informal Caregivers of General Older Adults and People With Alzheimer Disease and Related Dementia: Comparative Study",
journal="J Med Internet Res",
year="2025",
month="Feb",
day="28",
volume="27",
pages="e54847",
keywords="informal caregivers",
keywords="older adults",
keywords="Alzheimer disease and related dementia",
keywords="online support communities",
keywords="Reddit",
abstract="Background: Faced with multiple challenges, informal caregivers often turn to online support communities for information and support. While scholarly attention has focused on experiences expressed by informal caregivers in these communities, how caregivers' challenges and emotional expressions vary across different health contexts remains understudied. Objective: We aimed to examine and compare the challenges discussed by informal caregivers of general older adults and those of patients with Alzheimer disease and related dementia, as well as their emotional expressions, on Reddit. In addition, we examined how informal caregivers expressed their emotions in response to various challenges. Methods: We collected posts from 6 subreddits, including 3 subreddits on caregiving for older adults and 3 on caregiving for patients with Alzheimer disease and related dementia. Using topic modeling, we identified topics discussed by caregivers in the collected posts. We further used deep reading to contextualize these topics and understand the challenges behind them, conducted sentiment analysis to investigate their emotional expressions, and used Spearman rank-order correlation to examine the relationship between the obtained topics and emotions. Results: In total, 3028 posts were retrieved, including 1552 from older adult--related subreddits and 1476 from Alzheimer disease--related subreddits; 18 key topics were identified, with the most frequent topics being expressing feelings (2178/3028, 71.93\%) and seeking advice and support (1982/3028, 65.46\%). Other topics covered various challenges in caregiving, such as duration of medical care (1954/3028, 64.53\%), sleep and incontinence (1536/3028, 50.73\%), financial issues (1348/3028, 44.52\%), and nursing home (1221/3028, 40.32\%). There was a positive, negligible correlation between expressing feelings and seeking advice and support ($\rho$=0.09, P<.001). Other topics also showed positive, negligible or weak correlations with these 2 topics but in distinct patterns. Posts from older adult--related subreddits were more focused on practical caregiving issues and seeking advice and support, whereas posts from Alzheimer disease--related subreddits emphasized health- and medical-related topics and expressing feelings. Caregivers in both contexts predominantly expressed negative emotions (older adults: 1263/1552, 81.38\%; Alzheimer disease: 1247/1476, 84.49\%), with caregivers in Alzheimer disease--related subreddits exhibiting slightly greater fear and sadness (P<.001). Specific challenges were significantly correlated with negative emotions: duration of medicalcare was positively, weakly correlated with anger ($\rho$=0.25, P<.001), fear ($\rho$=0.25, P<.001), and sadness ($\rho$=0.22, P<.001). Medical appointments were positively, negligibly correlated with anger ($\rho$=0.10, P<.001), fear ($\rho$=0.09, P<.001), and sadness ($\rho$=0.06, P<.001). Sleep and incontinence ($\rho$=0.14, P<.001) and finances ($\rho$=0.24, P<.001) were positively, weakly correlated with anger. Conclusions: By identifying the challenges and feelings expressed by caregivers for general older adults and caregivers for patients with Alzheimer disease and related dementia, our findings could inform health practitioners and policy makers in developing more targeted support interventions for informal caregivers in different contexts. ",
doi="10.2196/54847",
url="https://www.jmir.org/2025/1/e54847",
url="http://www.ncbi.nlm.nih.gov/pubmed/40053723"
}


@Article{info:doi/10.2196/66690,
author="Meier-Diedrich, Eva
and Esch, Tobias
and H{\"a}gglund, Maria
and Heinze, Martin
and Hochwarter, Stefan
and Speck, Justin
and Wagener, Marie
and Dahling, Volker
and Schwarz, Julian",
title="Experiences of Older Mental Health Patients and Their Care Partners Using a Proxy Account to Access Open Notes: Qualitative Interview Study",
journal="JMIR Aging",
year="2025",
month="Feb",
day="24",
volume="8",
pages="e66690",
keywords="psychiatry",
keywords="eHealth",
keywords="mental health",
keywords="digital literacy",
keywords="older patients",
keywords="older adult",
keywords="care partner",
keywords="proxy access",
keywords="open record access",
keywords="Open Notes",
keywords="patient portal",
keywords="artificial intelligence",
keywords="AI",
abstract="Background: Older patients with serious mental illnesses such as cognitive disorders often rely on family members or spouses (care partners [CPs]) to meet their health care needs. CPs frequently lack essential information to fully understand the patients' illnesses and effectively support their treatment. Open Notes provide patients with digital access to their health care professionals' clinical notes and are associated with many positive outcomes, such as increased adherence and empowerment. However, older patients who use Open Notes may encounter use barriers such as limited digital literacy. Recent developments allow CPs to access Open Notes (proxy access) and receive valuable information, which holds significant potential for improving the care of older patients. Objective: This study explored the experiences, barriers, and opportunities of older mental health patients and their CPs related to using Open Notes. Furthermore, influencing factors and interdependencies were identified. Methods: Older patients (n=10) and their CPs (n=10) were provided with web-based proxy access to clinical documentation through a web-based patient portal. In-depth qualitative interviews (N=20) were conducted to explore experiences with this access. Data analysis was conducted in accordance with the constructivist grounded theory approach. Results: The prerequisites for using Open Notes with proxy access were sufficient digital literacy on the part of the patient or CP, as well as the establishment of a trusting relationship between patients and CPs. Access to Open Notes enabled patients and CPs to gain a deeper understanding of the illness and its treatment while also facilitating enhanced contact with health care professionals. This resulted in greater involvement in the treatment process but may also prompt changes in relationship dynamics---CPs are better equipped to support patients in their health care but may also tend to monitor or control them through Open Notes. As a result, the introduction of Open Notes was accompanied by mixed feelings. Conclusions: It is of utmost importance to provide older patients with comprehensive access to Open Notes to preserve their health autonomy. However, the involvement of CPs through proxy access is of great value in improving the care of older patients, especially those with cognitive impairments. ",
doi="10.2196/66690",
url="https://aging.jmir.org/2025/1/e66690"
}


@Article{info:doi/10.2196/56584,
author="Madeira, Ricardo
and Esteves, Dulce
and Pinto, Nuno
and Vercelli, Alessandro
and Vaz Patto, Maria",
title="Acceptance Factors and Barriers to the Implementation of a Digital Intervention With Older Adults With Dementia or Caregivers: Protocol for an Umbrella Review",
journal="JMIR Res Protoc",
year="2025",
month="Feb",
day="24",
volume="14",
pages="e56584",
keywords="dementia",
keywords="aging",
keywords="telemedicine",
keywords="implementation",
keywords="digital intervention",
keywords="older people",
keywords="elderly",
keywords="geriatrics",
keywords="mobile applications",
keywords="barriers",
keywords="adherence",
keywords="caregivers",
keywords="self-management",
keywords="acceptability",
abstract="Background: The increase in average life expectancy, aging, and the rise in the number of people living with dementia contribute to growing interest from the scientific community. As the disease progresses, people with dementia may need help with most daily activities and need to be supervised by their carer to ensure their safety. With the help of technology, health care provides new means of self-managing health that support active aging, allowing older people and people with dementia to live independently in their homes for a longer period of time. Although some systematic reviews have revealed some of the impacts of using digital interventions in this area, a broad systematic review that examines the overall results of the effect of this intervention type is mandatory. Objective: The aim of this review is to further investigate and understand the acceptability and barriers to using technology to monitor and manage health conditions of people living with dementia and their caregivers. Methods: A review of systematic reviews on acceptability factors and barriers for people with dementia and caregivers was carried out. Interventions that assessed acceptability factors and barriers to the use of technology by people with dementia or their carers were included. Each potentially relevant systematic review was assessed in full text by a member of a team of external experts. Results: The analysis of the results will be presented in the form of a detailed table of the characteristics of the reviews included. It will also describe the technologies used and factors of acceptability and barriers to their use. The search and preliminary analysis were carried out between May 5, 2023, and August 1, 2024. Conclusions: This review will play an important role as a comprehensive, evidence-based summary of the barriers and facilitators to the use of digital interventions. This review may help to establish effective policy and clinical guideline recommendations. ",
doi="10.2196/56584",
url="https://www.researchprotocols.org/2025/1/e56584"
}


@Article{info:doi/10.2196/55468,
author="Frederiksen, Steen Kristian
and Hahn-Pedersen, Julie
and Crawford, Rebecca
and Morrison, Ross
and Jeppesen, Rose
and Doward, Lynda
and Weidner, Wendy",
title="Traversing Shifting Sands---the Challenges of Caring for Someone With Alzheimer's Disease and the Impact on Care Partners: Social Media Content Analysis",
journal="J Med Internet Res",
year="2025",
month="Feb",
day="18",
volume="27",
pages="e55468",
keywords="Alzheimer disease",
keywords="caregiver",
keywords="burden",
keywords="health-related quality of life",
keywords="social media",
abstract="Background: Social media data provide a valuable opportunity to explore the effects that Alzheimer disease (AD) has on care partners, including the aspects of providing care that have the greatest impacts on their lives and well-being and their priorities for their loved ones' treatment. Objective: The objective of this social media review was to gain insight into the impact of caring for someone with AD, focusing particularly on impacts on psychological and emotional well-being, social functioning, daily life and ability to work, health-related quality of life, social functioning, and relationships. Methods: We reviewed social media posts from 4 sources---YouTube (Google), Alzheimer's Association, Alzheimer Society of Canada, and Dementia UK---to gain insights into the impact of AD on care partners. English-language posts uploaded between May 2011 and May 2021 that discussed the impact of AD on care partners were included and analyzed thematically. Results: Of the 279 posts identified, 55 posts, shared by 70 contributors (4 people living with AD and 66 care partners or family members), met the review criteria. The top 3 reported or observed impacts of AD discussed by contributors were psychological and emotional well-being (53/70, 76\%), social life and relationships (37/70, 53\%), and care partner overall health-related quality of life (27/70, 39\%). An important theme that emerged was the emotional distress and sadness (24/70, 34\%) associated with the care partners' experience of ``living bereavement'' or ``anticipatory grief.'' Contributors also reported impacts on care partners' daily life (9/70, 13\%) and work and employment (8/70, 11\%). Care partners' emotional distress was also exacerbated by loved ones' AD-related symptoms (eg, altered behavior and memory loss). Caregiving had long-term consequences for care partners, including diminished personal well-being, family and personal sacrifices, loss of employment, and unanticipated financial burdens. Conclusions: Insights from social media emphasized the psychological, emotional, professional, and financial impacts on individuals providing informal care for a person with AD and the need for improved care partner support. A comprehensive understanding of care partners' experiences is needed to capture the true impact of AD. ",
doi="10.2196/55468",
url="https://www.jmir.org/2025/1/e55468"
}


@Article{info:doi/10.2196/60652,
author="Dupont, Charl{\`e}ss
and Smets, Tinne
and Potts, Courtney
and Monnet, Fanny
and Pivodic, Lara
and De Vleminck, Aline
and Van Audenhove, Chantal
and Mulvenna, Maurice
and Van den Block, Lieve",
title="Uncovering Specific Navigation Patterns by Assessing User Engagement of People With Dementia and Family Caregivers With an Advance Care Planning Website: Quantitative Analysis of Web Log Data",
journal="JMIR Aging",
year="2025",
month="Feb",
day="11",
volume="8",
pages="e60652",
keywords="dementia",
keywords="advance care planning",
keywords="user engagement",
keywords="web-based tool",
keywords="care",
keywords="website",
keywords="caregiver",
keywords="communication",
keywords="tool",
keywords="online",
abstract="Background: Web-based tools have gained popularity to inform and empower individuals in advance care planning. We have developed an interactive website tailored to the unique needs of people with dementia and their families to support advance care planning. This website aims to break away from the rigid pathways shown in other tools that support advance care planning, in which advance care planning is shown as a linear process from information to reflection, communication, and documentation. Objective: This study aimed to assess the website's usage by people with dementia and their family caregivers, identify distinct user engagement patterns, and visualize how users navigated the website. Methods: We analyzed the website's log data obtained from an 8-week evaluation study of the site. Interactions with the website were collected in log data files and included visited web pages or clicked-on hyperlinks. Distinct user engagement patterns were identified using K-means clustering process mining, a technique that extracts insights from log data to model and visualize workflows, was applied to visualize user pathways through the website. Results: A total of 52 participants, 21 individuals with dementia and their family caregivers as dyads and 10 family caregivers were included in the study. Throughout the 8-week study, users spent an average of 35.3 (SD 82.9) minutes over 5.5 (SD 3.4) unique days on the website. Family caregivers mostly used the website (alone or with a person with dementia) throughout the 8-week study. Only 3 people with dementia used it on their own. In total, 3 distinct engagement patterns emerged: low, moderate, and high. Low-engagement participants spent less time on the website during the 8 weeks, following a linear path from information to communication to documentation. Moderate- and high-engagement users showed more dynamic patterns, frequently navigating between information pages and communication tools to facilitate exploration of aspects related to advance care planning. Conclusions: The diverse engagement patterns underscore the need for personalized support in advance care planning and challenge the conventional linear advance care planning representations found in other web-based tools. ",
doi="10.2196/60652",
url="https://aging.jmir.org/2025/1/e60652"
}


@Article{info:doi/10.2196/58528,
author="Lee, Man-Sin Maggie
and Yeoh, Eng-kiong
and Wong, Lai-Yi Eliza
and Bai, Xue
and Yeung, Chun-Yiu Nelson
and French, Catherine
and Taddese, Henock",
title="Perceptions and Experiences of Caregiver-Employees, Employers, and Health Care Professionals With Caregiver-Friendly Workplace Policy in Hong Kong: Thematic Analysis",
journal="Interact J Med Res",
year="2025",
month="Feb",
day="10",
volume="14",
pages="e58528",
keywords="caregiver employees",
keywords="workplace",
keywords="discrimination",
keywords="dual roles",
keywords="caregiver burden",
abstract="Background: Caregiver-employees (CEs) for older adults experience a high burden to fulfill their dual roles. Caregiver-friendly workplace policy (CFWP) has been used in many countries to balance employment and caregiving duties, but it is a relatively new concept in Hong Kong. Objective: This study explored the views and experiences of CEs, employers, and health care professionals regarding CFWP (specifically for older adult caregivers) in Hong Kong. Methods: This study explored the CFWP-related views and experiences in Hong Kong using 15 in-depth interviews with purposively sampled CEs for older adults, employers, and health care professionals. Results: Two context-related themes (``lacking leadership'' and ``unfavorable culture'') were identified with thematic analysis. They explain the absence of CFWP in Hong Kong due to the lack of governmental and organizational leadership, and the additional burden experienced by CEs because of the working culture that underpins work-life separation, overprizing business interest, and unsympathetic corporate attitude. Implicit voice theory was applicable in explaining CEs' nondisclosure about their status at work due to potential risks. In addition, the two facilitation-related themes (``role struggle'' and ``inadequate support'') identified in this study exhibit how the dual role had positive and negative spillover effects on each other and the inadequacy of social welfare and health care support systems. Conclusions: We strongly recommend exploring and adopting potential CFWP in Hong Kong, considering the complexity of factors identified in this study. ",
doi="10.2196/58528",
url="https://www.i-jmr.org/2025/1/e58528"
}


@Article{info:doi/10.2196/64445,
author="Abdulazeem, Hebatullah
and Borges do Nascimento, J{\'u}nior Israel
and Weerasekara, Ishanka
and Sharifan, Amin
and Grandi Bianco, Victor
and Cunningham, Ciara
and Kularathne, Indunil
and Deeken, Genevieve
and de Barros, Jerome
and Sathian, Brijesh
and {\O}stengaard, Lasse
and Lamontagne-Godwin, Frederique
and van Hoof, Joost
and Lazeri, Ledia
and Redlich, Cassie
and Marston, R. Hannah
and Dos Santos, Alistair Ryan
and Azzopardi-Muscat, Natasha
and Yon, Yongjie
and Novillo-Ortiz, David",
title="Use of Digital Health Technologies for Dementia Care: Bibliometric Analysis and Report",
journal="JMIR Ment Health",
year="2025",
month="Feb",
day="10",
volume="12",
pages="e64445",
keywords="people living with dementia",
keywords="digital health technologies",
keywords="bibliometric analysis",
keywords="evidence-based medicine",
abstract="Background: Dementia is a syndrome that compromises neurocognitive functions of the individual and that is affecting 55 million individuals globally, as well as global health care systems, national economic systems, and family members. Objective: This study aimed to determine the status quo of scientific production on use of digital health technologies (DHTs) to support (older) people living with dementia, their families, and care partners. In addition, our study aimed to map the current landscape of global research initiatives on DHTs on the prevention, diagnosis, treatment, and support of people living with dementia and their caregivers. Methods: A bibliometric analysis was performed as part of a systematic review protocol using MEDLINE, Embase, Scopus, Epistemonikos, the Cochrane Database of Systematic Reviews, and Google Scholar for systematic and scoping reviews on DHTs and dementia up to February 21, 2024. Search terms included various forms of dementia and DHTs. Two independent reviewers conducted a 2-stage screening process with disagreements resolved by a third reviewer. Eligible reviews were then subjected to a bibliometric analysis using VOSviewer to evaluate document types, authorship, countries, institutions, journal sources, references, and keywords, creating social network maps to visualize emergent research trends. Results: A total of 704 records met the inclusion criteria for bibliometric analysis. Most reviews were systematic, with a substantial number covering mobile health, telehealth, and computer-based cognitive interventions. Bibliometric analysis revealed that the Journal of Medical Internet Research had the highest number of reviews and citations. Researchers from 66 countries contributed, with the United Kingdom and the United States as the most prolific. Overall, the number of publications covering the intersection of DHTs and dementia has increased steadily over time. However, the diversity of reviews conducted on a single topic has resulted in duplicated scientific efforts. Our assessment of contributions from countries, institutions, and key stakeholders reveals significant trends and knowledge gaps, particularly highlighting the dominance of high-income countries in this research domain. Furthermore, our findings emphasize the critical importance of interdisciplinary, collaborative teams and offer clear directions for future research, especially in underrepresented regions. Conclusions: Our study shows a steady increase in dementia- and DHT-related publications, particularly in areas such as mobile health, virtual reality, artificial intelligence, and sensor-based technologies interventions. This increase underscores the importance of systematic approaches and interdisciplinary collaborations, while identifying knowledge gaps, especially in lower-income regions. It is crucial that researchers worldwide adhere to evidence-based medicine principles to avoid duplication of efforts. This analysis offers a valuable foundation for policy makers and academics, emphasizing the need for an international collaborative task force to address knowledge gaps and advance dementia care globally. Trial Registration: PROSPERO CRD42024511241; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=511241 ",
doi="10.2196/64445",
url="https://mental.jmir.org/2025/1/e64445"
}


@Article{info:doi/10.2196/62936,
author="Bergh, Sverre
and Benth, {\vS}altyt? J?rat?
and H{\o}gset, Dyrendal Lisbeth
and Rydjord, Britt
and Kayser, Lars",
title="Assessment of Technology Readiness in Norwegian Older Adults With Long-Term Health Conditions Receiving Home Care Services: Cross-Sectional Questionnaire Study",
journal="JMIR Aging",
year="2025",
month="Feb",
day="7",
volume="8",
pages="e62936",
keywords="eHealth literacy",
keywords="digital health services",
keywords="technology readiness",
keywords="Readiness and Enablement Index for Health Technology",
keywords="READHY",
keywords="chronic conditions",
abstract="Background: With the increasing number of older adults globally, there is a constant search for new ways to organize health care services. Digital health services are promising and may reduce workload and at the same time improve patient well-being. A certain level of eHealth literacy is needed to be able to use digital health services. However, knowledge of technology readiness in this target group of older adults is unclear. Objective: The aim of this study was to understand the technology readiness level of a group of older adults who were provided home care services in order to address the present and future needs of this group in relation to the implementation of digital health care services. Methods: This quantitative cross-sectional study included 149 older adults from Norway receiving home care services. The participants completed the Readiness and Enablement Index for Health Technology (READHY) instrument, assessments of well-being (World Health Organization-Five Well-Being Index [WHO-5]), and assessments of demographic and clinical variables (sex, age, education, living situation, comorbidity, use of digital devices, and use of IT). Cluster analyses were used to group the users according to their technology readiness. Results: The mean participant age was 78.6 (SD 8.0) years, and 55.7\% (83/149) were women. There was good consistency within the assumed READHY scales (Cronbach $\alpha$=.61-.91). The participants were grouped into 4 clusters, which differed in terms of READHY scores, demographic variables, and the use of IT in daily life. Participants in cluster 1 (n=40) had the highest scores on the READHY scales, were younger, had a larger proportion of men, had higher education, and had better access to digital devices and IT. Participants in cluster 4 (n=16) scored the lowest on eHealth literacy knowledge. Participants in cluster 1 had relatively high levels of eHealth literacy knowledge and were expected to benefit from digital health services, while participants in cluster 4 had the lowest level of eHealth literacy and would not easily be able to start using digital health services. Conclusions: The technology readiness level varied in our cohort of Norwegian participants receiving home care. Not all elderly people have the eHealth literacy to fully benefit from digital health services. Participants in cluster 4 (n=16) had the lowest scores in the eHealth Literacy Questionnaire scales in the READHY instrument and should be offered nondigital services or would need extensive management support. The demographic differences between the 4 clusters may inform stakeholders about which older people need the most training and support to take advantage of digital health care services. ",
doi="10.2196/62936",
url="https://aging.jmir.org/2025/1/e62936",
url="http://www.ncbi.nlm.nih.gov/pubmed/39918862"
}


@Article{info:doi/10.2196/66017,
author="Kor, Kin Patrick Pui
and Liu, Wa Justina Yat
and Wong, Ching Arkers Kwan
and Tsang, Lik Alex Pak
and Tan, Zhi Han
and Cheung, Ki Daphne Sze
and Leung, Wai Humphrey Kwong
and Wong, Yuet Frances Kam",
title="Effectiveness of a Dyadic Technology--Enhanced Home-Based Horticultural Therapy on Psychosocial Well-Being Among People With Dementia and Their Family Caregivers: Multimethods Pilot Study",
journal="JMIR Aging",
year="2025",
month="Feb",
day="5",
volume="8",
pages="e66017",
keywords="horticultural activity",
keywords="dementia",
keywords="caregivers",
keywords="dyadic intervention",
keywords="technology--enhanced intervention",
abstract="Background: Horticultural therapy (HT) has been proposed to be an effective intervention for improving the psychosocial well-being of people with dementia and their caregivers. However, constraints such as limited land space in high-density cities, unstable weather, and lack of gardening experience may hamper the delivery of HT to people with dementia and their caregivers. Objective: This pilot study aimed to examine the feasibility and preliminary effects of a technology-enhanced home-based HT for people with dementia and their caregivers using a hydroponic indoor growing system. Methods: A single-group pre-post design was adopted. A total of 37 dyads of people with dementia and their caregivers participated in 3 weekly face-to-face sessions, followed by 8 weeks of home-based horticultural activities. Outcomes were measured at baseline and postintervention (at week 11), including feasibility outcomes, cognitive function, neuropsychiatric symptoms, and happiness levels of people with dementia. Caregivers' outcomes included positive aspects of caregiving, perceived stress levels, depressive symptoms, caregiver distress, and happiness levels. Semistructured focus group interviews were conducted with the caregivers to further explore their horticultural experience. Results: Intervention feasibility was established with a completion rate of 83.78\% and an attrition rate of 2.63\% (n=1). Significant improvements were detected in caregiver distress (P<.05) and the happiness level of people with dementia (P<.01). The qualitative findings indicated that HT improved the psychological well-being of both people with dementia and caregivers, enhanced the relationships between caregivers and people with dementia, expanded the caregivers' social networks, and enhanced the autobiographical memory of people with dementia. Conclusions: This pilot study provides evidence on the feasibility of using a hydroponic indoor grower to conduct home-based HT for people with dementia and their caregivers. The findings suggest positive effects on the psychological well-being of both people with dementia and their caregivers. Caregivers reported potential positive effects of HT on the autobiographical memory retrieval of people with dementia. Due to the pilot nature of this study, a control group was not employed. Therefore, large-scale randomized controlled trials are encouraged to further confirm the effectiveness of the intervention. Trial Registration: ClinicalTrials.gov NCT05577975; https://clinicaltrials.gov/study/NCT05577975 ",
doi="10.2196/66017",
url="https://aging.jmir.org/2025/1/e66017"
}


@Article{info:doi/10.2196/59291,
author="Ko, Eunjung
and Gao, Ye
and Wang, Peng
and Wijayasingha, Lahiru
and Wright, D. Kathy
and Gordon, C. Kristina
and Wang, Hongning
and Stankovic, A. John
and Rose, M. Karen",
title="Recruitment Challenges and Strategies in a Technology-Based Intervention for Dementia Caregivers: Descriptive Study",
journal="JMIR Form Res",
year="2025",
month="Jan",
day="17",
volume="9",
pages="e59291",
keywords="recruitment challenges and strategies",
keywords="technology-based intervention",
keywords="dementia caregivers",
keywords="dementia",
keywords="mobile phone",
keywords="Alzheimer disease",
keywords="smart health",
abstract="Background: Researchers have encountered challenges in recruiting unpaid caregivers of people living with Alzheimer disease and related dementias for intervention studies. However, little is known about the reasons for nonparticipation in in-home smart health interventions in community-based settings. Objective: This study aimed to (1) assess recruitment rates in a smart health technology intervention for caregivers of people living with Alzheimer disease and related dementias and reasons for nonparticipation among them and (2) discuss lessons learned from recruitment challenges and strategies to improve recruitment. Methods: The smart health intervention was a 4-month, single-arm trial designed to evaluate an in-home, technology-based intervention that monitors stressful moments for caregiving dyads through acoustic signals and to provide the caregivers with real-time stress management strategies. The recruitment involved two main methods: on-site engagement by a recruiter from a memory clinic and social media advertising. Caregivers were screened for eligibility by phone between January 2021 and September 2023. The recruitment rates, reasons for nonparticipation, and participant demographics were analyzed using descriptive statistics. Results: Of 201 caregivers contacted, 11 were enrolled in this study. Eighty-two caregivers did not return the screening call, and others did not participate due to privacy concerns (n=30), lack of interest (n=29), and burdensome study procedures (n=26). Our recruitment strategies included addressing privacy concerns, visualizing collected data through a dashboard, boosting social media presence, increasing the recruitment budget, updating advertisements, and preparing and deploying additional study devices. Conclusions: This study highlighted barriers to participation in the smart health intervention. Despite several recruitment strategies, enrollment rates remained below expectations. These findings underscore the need for future research to explore alternative methods for increasing the recruitment of informal dementia caregivers in technology-based intervention studies. Trial Registration: ClinicalTrials.gov NCT04536701; https://clinicaltrials.gov/study/NCT04536701 International Registered Report Identifier (IRRID): RR2-10.1111/jan.14714 ",
doi="10.2196/59291",
url="https://formative.jmir.org/2025/1/e59291"
}


@Article{info:doi/10.2196/64757,
author="Foster, L. Michelle
and Egwuonwu, Chinenye
and Vernon, Erin
and Alarifi, Mohammad
and Hughes, Courtney M.",
title="Informal Caregivers Connecting on the Web: Content Analysis of Posts on Discussion Forums",
journal="JMIR Form Res",
year="2025",
month="Jan",
day="17",
volume="9",
pages="e64757",
keywords="informal caregivers",
keywords="family caregivers",
keywords="discussion forum",
keywords="caregiver support",
keywords="support group",
keywords="social support",
keywords="caregiver navigation",
keywords="content analysis",
keywords="adults",
keywords="United States",
keywords="informal care",
keywords="codebook",
keywords="thematic analysis",
keywords="web-based discussion",
keywords="web-based forums",
keywords="clinicians",
keywords="medical care",
keywords="peer-to-peer support",
keywords="web-based communities",
keywords="caregivers",
abstract="Background: About 53 million adults in the United States offer informal care to family and friends with disease or disability. Such care has an estimated economic value of US \$600 million. Most informal caregivers are not paid nor trained in caregiving, with many experiencing higher-than-average levels of stress and depression and lower levels of physical health. Some informal caregivers participate in web-based forums related to their caregiving role. Objective: This study aimed to explore how informal caregivers use easy-to-access caregiving web-based forums, including the types of information they share and seek from others. It also aimed to gain insights into the informal caregiver experience from the content these informal caregivers posted. Methods: The study population consisted of participants who posted on 5 web-based forums for informal caregivers between February and April 2024. Researchers extracted the first 6 responses to the first 20 questions and comments to appear posted by the informal caregivers in each of the 5 forums, removing any individually identifying information. We used a codebook thematic analysis approach to examine the data with Dedoose (SocioCultural Research Consultants). Researchers independently read all posts and coded the data. The author group discussed the codes, reiteratively refined them, and identified themes within the data. Results: The data consisted of 100 initial posts and 600 responses. Over half of the initial posts included specific questions, with the remaining initial posts sharing experiences or reflections. Posts ranged in length from a sentence to more than 500 words. Domains identified included handling interpersonal challenges, navigating complicated systems, gathering tactical coping strategies, managing emotions, and connecting with others in similar situations. Negative interpersonal interactions were mentioned 123 times, with 77 posts describing challenging situations with extended family. Posters inquired about accessing resources, with health care and health insurance included 51 times, while legal and financial concerns were addressed 124 times. Caregiving challenges were mentioned hundreds of times, including discussion of hygiene (n=18), nutrition (n=21), and desire for a caregiving break (n=47). Posters expressed emotion in their comments 180 times, which included 32 mentions of guilt and 26 mentions of positive emotion. The importance of web-based group support was mentioned 301 times. Conclusions: Informal caregivers play an essential role in society. Many experience multifaceted challenges related to their caregiving role, and some turn to the internet for community. Accessing web-based discussion forums is a low-barrier method for informal caregivers to connect with others who may be experiencing similar emotions and challenges. Gaining a greater understanding of the ways informal caregivers seek advice and offer support to one another provides insight into the challenges they face. The domains identified on these forums may be helpful, as clinicians provide information to care recipients and their informal caregivers along their health journeys. ",
doi="10.2196/64757",
url="https://formative.jmir.org/2025/1/e64757"
}


@Article{info:doi/10.2196/60382,
author="McCage, Sydney
and Walker, Kristin
and Cornelius, Talea
and Parker, A. Robert
and Dams-O'Connor, Kristen
and Dickerson, Brad
and Ritchie, Christine
and Vranceanu, Ana-Maria
and Bannon, Sarah",
title="A Live Video Resiliency Dyadic Intervention for Persons With Dementia and Their Care-Partners Early After Diagnosis: Protocol for Open Pilot of Resilient Together for Dementia",
journal="JMIR Res Protoc",
year="2025",
month="Jan",
day="15",
volume="14",
pages="e60382",
keywords="dementia",
keywords="dyad",
keywords="emotional distress",
keywords="intervention",
keywords="diagnosis",
keywords="telehealth",
keywords="resilient",
keywords="dyadic intervention",
keywords="care-partner",
keywords="Alzheimer's disease",
keywords="ADRD",
keywords="psychosocial",
keywords="depression",
abstract="Background: Alzheimer disease and related dementias (ADRDs) are increasingly common progressive conditions that have a substantial impact on individuals and their primary care partners---together described as a dyad. The stressors experienced by dyad members at around the time of ADRD diagnosis commonly produce clinically elevated emotional distress (ie, depression and anxiety symptoms), which can become chronic and negatively impact health, relationships, and the overall quality of life. Dyads commonly report unmet needs for early support to address these challenges early after diagnosis. Objective: This study is part of a larger study that has the primary objective to develop, adapt, and establish the feasibility of Resilient Together for Dementia (RT-ADRD), a novel dyadic skills-based intervention aimed at preventing chronic emotional distress early after diagnosis. The present study protocol describes an open pilot of the RT-ADRD intervention. This study will allow the study team to gather feedback on intervention components, administration of study measures, issues within general protocol, and perceptions about live video interventions prior to a larger feasibility trial. Methods: All study procedures will be conducted on the web (via phone and health care system--supported videoconferencing) to optimize accessibility, inclusion, and representativeness. Eligible dyads will include couples (up to N=10) referred from Mount Sinai Hospital (MSH) clinics within 3 months of an ADRD diagnosis. Dyads will be referred by their diagnosing clinicians (eg, neurologists, geriatricians, and neuropsychologists) and screened for eligibility. Eligible dyads will have at least one member who exhibits clinically elevated emotional distress and will demonstrate capacity to consent to research participation on a standardized assessment. Consenting dyads will complete baseline assessments of emotional distress, quality of life, relationship functioning, and resiliency skills. Dyads will then participate in 6 weekly RT-ADRD sessions together (30-60 minutes each). After the conclusion of the intervention, dyad members will complete posttest assessments with similar measures as the pretest. Finally, dyads will participate together in a single 60-minute exit interview to gather information on intervention content and procedures to refine the intervention before a pilot feasibility trial. Results: This study has been approved by the MSH institutional review board and is registered on ClinicalTrials.gov (NCT06421545). We anticipate that the study will be completed by late 2024. Conclusions: We will use these results to administer changes and develop procedures for a pilot feasibility trial of RT-ADRD relative to a minimally enhanced control condition. Our study will allow us to gather comprehensive information on proposed RT-ADRD procedures and content and the best ways of delivering prevention-focused interventions to reduce the potential for chronic emotional distress stemming from ADRDs. International Registered Report Identifier (IRRID): DERR1-10.2196/60382 ",
doi="10.2196/60382",
url="https://www.researchprotocols.org/2025/1/e60382"
}


@Article{info:doi/10.2196/63949,
author="von Bosse, Alexa
and K{\"o}nig, Peter
and Jansen, Eva",
title="Influence of Partnership Relationships on Long-Term Neurological Rehabilitation in Germany: Protocol for a Qualitative Retrospective Study",
journal="JMIR Res Protoc",
year="2025",
month="Jan",
day="13",
volume="14",
pages="e63949",
keywords="neurological rehabilitation",
keywords="neurological injury",
keywords="therapeutic alliance",
keywords="relationship building",
keywords="caregivers",
keywords="family",
keywords="partnership",
keywords="health professionals",
keywords="neurological",
keywords="therapeutic",
keywords="Germany",
keywords="retrospective study",
keywords="narrative interview",
keywords="biopsychosocial",
keywords="family-centered",
abstract="Background: Acquired neurological diseases entail significant changes and influence the relationship between a patient and their significant other. In the context of long-term rehabilitation, those affected collaborate with health care professionals who are expected to have a positive impact on the lives of the affected individuals. Objective: This study aims to examine the changes in the relationship between the patient and their loved ones due to acquired neurological disorders and the influence of health care professionals on this relationship. Methods: Through sociogenetic type building, we will identify different types of patient-caregiver dyads and their effects on health care professionals and vice versa. The results will then be integrated into a model based on the theory of symbolic interactionism and Baxter's Relational Dialectics Theory. Results: This study is not funded and was approved by the ethics committee of the German Society for Nursing Science, and it complies with the Declaration of Helsinki. The data collection started in June 2024 based on narrative couple interviews and is running. We assume that patients and their relatives will demonstrate heterogeneity as individuals, as well as in their interactions within the dyad, regarding certain orientations such as coping with illness, motivation for therapy, and coping strategies. Conclusions: Our findings address a biopsychosocial perspective that enhances treatment approaches in neurological long-term care. Understanding the influence of professionals on dyadic couple relationships can improve rehabilitation effectiveness by tailoring therapeutic approaches to various patient types, relatives, and dyadic relationship constellations. This fosters patient- and family-centered therapy in line with holistic care. International Registered Report Identifier (IRRID): DERR1-10.2196/63949 ",
doi="10.2196/63949",
url="https://www.researchprotocols.org/2025/1/e63949",
url="http://www.ncbi.nlm.nih.gov/pubmed/39804683"
}


@Article{info:doi/10.2196/60566,
author="Bosco, Cristina
and Otenen, Ege
and Osorio Torres, John
and Nguyen, Vivian
and Chheda, Darshil
and Peng, Xinran
and Jessup, M. Nenette
and Himes, K. Anna
and Cureton, Bianca
and Lu, Yvonne
and Hill, V. Carl
and Hendrie, C. Hugh
and Barnes, A. Priscilla
and Shih, C. Patrick",
title="Designing a Multimodal and Culturally Relevant Alzheimer Disease and Related Dementia Generative Artificial Intelligence Tool for Black American Informal Caregivers: Cognitive Walk-Through Usability Study",
journal="JMIR Aging",
year="2025",
month="Jan",
day="8",
volume="8",
pages="e60566",
keywords="multimodality",
keywords="artificial intelligence",
keywords="AI",
keywords="generative AI",
keywords="usability",
keywords="black",
keywords="African American",
keywords="cultural",
keywords="Alzheimer's",
keywords="dementia",
keywords="caregivers",
keywords="mobile app",
keywords="interaction",
keywords="cognition",
keywords="user opinion",
keywords="geriatrics",
keywords="smartphone",
keywords="mHealth",
keywords="digital health",
keywords="aging",
abstract="Background: Many members of Black American communities, faced with the high prevalence of Alzheimer disease and related dementias (ADRD) within their demographic, find themselves taking on the role of informal caregivers. Despite being the primary individuals responsible for the care of individuals with ADRD, these caregivers often lack sufficient knowledge about ADRD-related health literacy and feel ill-prepared for their caregiving responsibilities. Generative AI has become a new promising technological innovation in the health care domain, particularly for improving health literacy; however, some generative AI developments might lead to increased bias and potential harm toward Black American communities. Therefore, rigorous development of generative AI tools to support the Black American community is needed. Objective: The goal of this study is to test Lola, a multimodal mobile app, which, by relying on generative AI, facilitates access to ADRD-related health information by enabling speech and text as inputs and providing auditory, textual, and visual outputs. Methods: To test our mobile app, we used the cognitive walk-through methodology, and we recruited 15 informal ADRD caregivers who were older than 50 years and part of the Black American community living within the region. We asked them to perform 3 tasks on the mobile app (ie, searching for an article on brain health, searching for local events, and finally, searching for opportunities to participate in scientific research in their area), then we recorded their opinions and impressions. The main aspects to be evaluated were the mobile app's usability, accessibility, cultural relevance, and adoption. Results: Our findings highlight the users' need for a system that enables interaction with different modalities, the need for a system that can provide personalized and culturally and contextually relevant information, and the role of community and physical spaces in increasing the use of Lola. Conclusions: Our study shows that, when designing for Black American older adults, a multimodal interaction with the generative AI system can allow individuals to choose their own interaction way and style based upon their interaction preferences and external constraints. This flexibility of interaction modes can guarantee an inclusive and engaging generative AI experience. ",
doi="10.2196/60566",
url="https://aging.jmir.org/2025/1/e60566"
}


@Article{info:doi/10.2196/63715,
author="Cheng, Sheung-Tak
and Ng, F. Peter H.",
title="The PDC30 Chatbot---Development of a Psychoeducational Resource on Dementia Caregiving Among Family Caregivers: Mixed Methods Acceptability Study",
journal="JMIR Aging",
year="2025",
month="Jan",
day="6",
volume="8",
pages="e63715",
keywords="Alzheimer",
keywords="caregiving",
keywords="chatbot",
keywords="conversational artificial intelligence",
keywords="dementia",
keywords="digital health",
keywords="health care technology",
keywords="psychoeducational",
keywords="medical innovations",
keywords="language models",
keywords="mobile phone",
abstract="Background: Providing ongoing support to the increasing number of caregivers as their needs change in the long-term course of dementia is a severe challenge to any health care system. Conversational artificial intelligence (AI) operating 24/7 may help to tackle this problem. Objective: This study describes the development of a generative AI chatbot---the PDC30 Chatbot---and evaluates its acceptability in a mixed methods study. Methods: The PDC30 Chatbot was developed using the GPT-4o large language model, with a personality agent to constrain its behavior to provide advice on dementia caregiving based on the Positive Dementia Caregiving in 30 Days Guidebook---a laypeople's resource based on a validated training manual for dementia caregivers. The PDC30 Chatbot's responses to 21 common questions were compared with those of ChatGPT and another chatbot (called Chatbot-B) as standards of reference. Chatbot-B was constructed using PDC30 Chatbot's architecture but replaced the latter's knowledge base with a collection of authoritative sources, including the World Health Organization's iSupport, By Us For Us Guides, and 185 web pages or manuals by Alzheimer's Association, National Institute on Aging, and UK Alzheimer's Society. In the next phase, to assess the acceptability of the PDC30 Chatbot, 21 family caregivers used the PDC30 Chatbot for two weeks and provided ratings and comments on its acceptability. Results: Among the three chatbots, ChatGPT's responses tended to be repetitive and not specific enough. PDC30 Chatbot and Chatbot-B, by virtue of their design, produced highly context-sensitive advice, with the former performing slightly better when the questions conveyed significant psychological distress on the part of the caregiver. In the acceptability study, caregivers found the PDC30 Chatbot highly user-friendly, and its responses quite helpful and easy to understand. They were rather satisfied with it and would strongly recommend it to other caregivers. During the 2-week trial period, the majority used the chatbot more than once per day. Thematic analysis of their written feedback revealed three major themes: helpfulness, accessibility, and improved attitude toward AI. Conclusions: The PDC30 Chatbot provides quality responses to caregiver questions, which are well-received by caregivers. Conversational AI is a viable approach to improve the support of caregivers. ",
doi="10.2196/63715",
url="https://aging.jmir.org/2025/1/e63715"
}


@Article{info:doi/10.2196/54734,
author="Sharma, Nikita
and Wrede, Christian
and Bastoni, Sofia
and Braakman-Jansen, Annemarie
and van Gemert-Pijnen, Lisette",
title="Continued Implementation and Use of a Digital Informal Care Support Platform Before and After COVID-19: Multimethod Study",
journal="JMIR Form Res",
year="2024",
month="Dec",
day="31",
volume="8",
pages="e54734",
keywords="digital care platform",
keywords="eHealth",
keywords="implementation",
keywords="informal care",
keywords="new digital normal",
keywords="COVID",
keywords="Caren",
keywords="consolidated framework",
abstract="Background: With the growing need of support for informal caregivers (ICs) and care recipients (CRs) during COVID-19, the uptake of digital care collaboration platforms such as Caren increased. Caren is a platform designed to (1) improve communication and coordination between ICs and health care professionals, (2) provide a better overview of the care process, and (3) enhance safe information sharing within the care network. Insights on the impact of COVID-19 on the implementation and use of informal care platforms such as Caren are still lacking. Objective: This study aimed to (1) identify technology developers' lessons learned from the continued implementation of Caren during COVID-19 and (2) examine pre-post COVID-19 changes in usage behavior and support functionality use of Caren. Methods: A focus group with developers of the Caren platform (N=3) was conducted to extract implementation lessons learned. Focus group data were first analyzed deductively, using the Consolidated Framework for Implementation Research domains (ie, individual characteristics, intervention characteristics, inner setting, and outer setting). Later, inductive analysis of overarching themes was performed. Furthermore, survey data were collected in 2019 (N=11,635) and 2022 (N=5573) among Caren platform users for comparing usage behavior and support functionality use. Data were analyzed using descriptive and inferential statistics. Results: Several lessons from the continued implementation of Caren during COVID-19 were identified. Those included, for example, alternative ways to engage with end users, incorporating automated user support and large-scale communication features, considering the fluctuation of user groups, and addressing data transparency concerns in health care. Quantitative results showed that the number of ICs and CRs who used Caren several times per day increased significantly (P<.001 for ICs and CRs) between 2019 (ICs: 23.8\%; CRs: 23.2\%) and 2022 (ICs: 35.2\%; CRs: 37\%), as well as the use of certain support functionalities such as a digital agenda to make and view appointments, a messaging function to receive updates and communicate with formal and informal caregivers, and digital notes to store important information. Conclusions: Our study offers insights into the influence of the COVID-19 pandemic on the usage and implementation of the digital informal care support platform Caren. The study shows how platform developers maintained the implementation during COVID-19 and which support functionalities gained relevance among ICs and CRs throughout the pandemic. The findings can be used to improve the design and implementation of current and future digital platforms to support informal care toward the ``new digital normal.'' ",
doi="10.2196/54734",
url="https://formative.jmir.org/2024/1/e54734"
}


@Article{info:doi/10.2196/63464,
author="Bacsu, Juanita-Dawne
and Fraser, Anne Sarah
and Jamali, Akbar Ali
and Conanan, Christine
and Chasteen, L. Alison
and Vellani, Shirin
and Gowda-Sookochoff, Rory
and Berger, Corinne
and Mah, C. Jasmine
and Fehr, Florriann
and Virani, Anila
and Rahemi, Zahra
and Nanson, Kate
and Cammer, Allison
and Andrew, K. Melissa
and Grewal, S. Karl
and McGilton, S. Katherine
and Lautrup, Samantha
and Spiteri, J. Raymond",
title="Navigating Awareness and Strategies to Support Dementia Advocacy on Social Media During World Alzheimer's Month: Infodemiology Study",
journal="JMIR Infodemiology",
year="2024",
month="Dec",
day="27",
volume="4",
pages="e63464",
keywords="dementia",
keywords="Alzheimer disease",
keywords="advocacy",
keywords="stigma",
keywords="myths",
keywords="awareness",
keywords="social media",
keywords="political lobbying",
keywords="lobbying",
keywords="X",
keywords="Twitter",
keywords="tweet",
keywords="thematic",
keywords="promotion",
keywords="campaign",
keywords="geriatric",
keywords="aging",
abstract="Background: Understanding advocacy strategies is essential to improving dementia awareness, reducing stigma, supporting cognitive health promotion, and influencing policy to support people living with dementia. However, there is a dearth of evidence-based research on advocacy strategies used to support dementia awareness. Objective: This study aimed to use posts from X (formerly known as Twitter) to understand dementia advocacy strategies during World Alzheimer's Awareness Month in September 2022. Methods: Posts were scraped from X during World Alzheimer's Awareness Month from September 1, 2022, to September 30, 2022. After applying filters, 1981 relevant posts were analyzed using thematic analysis, and measures were taken to support trustworthiness and rigor. Results: Our study revealed a variety of advocacy strategies, including sharing the voices of lived experience, targeting ethnic and cultural groups, myth-busting strategies, and political lobbying. Although a range of strategies were identified, further research is needed to examine advocacy strategies within different countries and political contexts. Furthermore, the impact of specific strategies on stigma reduction, cognitive health promotion, and policy change needs to be scientifically evaluated. Conclusions: Our study offers valuable insight into strategies to bolster dementia advocacy and awareness campaigns to support people living with dementia. Findings from our research may provide critical insight for policymakers, organizations, and health professionals working to reduce dementia-related stigma and increase the uptake of risk-reduction activities to support the promotion of cognitive health. ",
doi="10.2196/63464",
url="https://infodemiology.jmir.org/2024/1/e63464",
url="http://www.ncbi.nlm.nih.gov/pubmed/39729354"
}


@Article{info:doi/10.2196/67992,
author="Pickett, C. Andrew
and Valdez, Danny
and White, A. Lillian
and Loganathar, Priya
and Linden, Anna
and Boutilier, J. Justin
and Caldwell, Clover
and Elliott, Christian
and Zuraw, Matthew
and Werner, E. Nicole",
title="The CareVirtue Digital Journal for Family and Friend Caregivers of People Living With Alzheimer Disease and Related Dementias: Exploratory Topic Modeling and User Engagement Study",
journal="JMIR Aging",
year="2024",
month="Dec",
day="24",
volume="7",
pages="e67992",
keywords="caregiving",
keywords="dementia",
keywords="social support",
keywords="technology",
keywords="intervention",
keywords="Alzheimer disease",
keywords="family",
keywords="care network",
keywords="elder",
keywords="CareVirtue",
keywords="open text",
keywords="online platform",
keywords="digital journaling tool",
keywords="computational informatics",
keywords="thematic analysis",
keywords="topic modeling",
keywords="neurodegeneration",
keywords="gerontology",
keywords="sentiment analysis",
abstract="Background: As Alzheimer disease (AD) and AD-related dementias (ADRD) progress, individuals increasingly require assistance from unpaid, informal caregivers to support them in activities of daily living. These caregivers may experience high levels of financial, mental, and physical strain associated with providing care. CareVirtue is a web-based tool created to connect and support multiple individuals across a care network to coordinate care activities and share important information, thereby reducing care burden. Objective: This study aims to use a computational informatics approach to thematically analyze open text written by AD/ADRD caregivers in the CareVirtue platform. We then explore relationships between identified themes and use patterns. Methods: We analyzed journal posts (n=1555 posts; 170,212 words) generated by 51 unique users of the CareVirtue platform. Latent themes were identified using a neural network approach to topic modeling. We calculated a sentiment score for each post using the Valence Aware Dictionary and Sentiment Reasoner. We then examined relationships between identified topics; semantic sentiment; and use-related data, including post word count and self-reported mood. Results: We identified 5 primary topics in users' journal posts, including descriptions of specific events, professional and medical care, routine daily activities, nighttime symptoms, and bathroom/toileting issues. This 5-topic model demonstrated adequate fit to the data, having the highest coherence score (0.41) among those tested. We observed group differences across these topics in both word count and semantic sentiment. Further, posts made in the evening were both longer and more semantically positive than other times of the day. Conclusions: Users of the CareVirtue platform journaled about a variety of different topics, including generalized experiences and specific behavioral symptomology of AD/ADRD, suggesting a desire to record and share broadly across the care network. Posts were the most positive in the early evening when the tool was used habitually, rather than when writing about acute events or symptomology. We discuss the value of embedding informatics-based tools into digital interventions to facilitate real-time content delivery. ",
doi="10.2196/67992",
url="https://aging.jmir.org/2024/1/e67992"
}


@Article{info:doi/10.2196/57308,
author="Ruggiano, Nicole
and Brown, Leslie Ellen
and Clarke, J. Peter
and Hristidis, Vagelis
and Roberts, Lisa
and Framil Suarez, Victoria Carmen
and Allala, Chaithra Sai
and Hurley, Shannon
and Kopcsik, Chrystine
and Daquin, Jane
and Chevez, Hamilton
and Chang-Lau, Raymond
and Agronin, Marc
and Geldmacher, S. David",
title="An Evidence-Based IT Program With Chatbot to Support Caregiving and Clinical Care for People With Dementia: The CareHeroes Development and Usability Pilot",
journal="JMIR Aging",
year="2024",
month="Dec",
day="23",
volume="7",
pages="e57308",
keywords="Alzheimer disease",
keywords="artificial intelligence",
keywords="caregivers",
keywords="chatbot",
keywords="dementia",
keywords="mobile applications",
keywords="conversational agent",
keywords="design",
keywords="apps",
abstract="Background: There are numerous communication barriers between family caregivers and providers of people living with dementia, which can pose challenges to caregiving and clinical decision-making. To address these barriers, a new web and mobile-enabled app, called CareHeroes, was developed, which promotes the collection and secured sharing of clinical information between caregivers and providers. It also provides caregiver support and education. Objective: The primary study objective was to examine whether dementia caregivers would use CareHeroes as an adjunct to care and gather psychosocial data from those who used the app. Methods: This paper presents the implementation process used to integrate CareHeroes into clinical care at 2 memory clinics and preliminary outcome evaluation. Family caregivers receiving services at clinics were asked to use the app for a 12-month period to collect, track, and share clinical information with the care recipient's provider. They also used it to assess their own mental health symptoms. Psychosocial outcomes were assessed through telephone interviews and user data were collected by the app. Results: A total of 21 caregivers enrolled in the pilot study across the 2 memory clinics. Usage data indicated that caregivers used many of the features in the CareHeroes app, though the chatbot was the most frequently used feature. Outcome data indicated that caregivers' depression was lower at 3-month follow-up (t11=2.03, P=.03). Conclusions: Recruitment and retention of the pilot study were impacted by COVID-19 restrictions, and therefore more testing is needed with a larger sample to determine the potential impact of CareHeroes on caregivers' mental health. Despite this limitation, the pilot study demonstrated that integrating a new supportive app for caregivers as an adjunct to clinical dementia care is feasible. Implications for future technology intervention development, implementation planning, and testing for caregivers of people living with dementia are discussed. ",
doi="10.2196/57308",
url="https://aging.jmir.org/2024/1/e57308"
}


@Article{info:doi/10.2196/59865,
author="Supplieth, Juliana
and Lech, Sonia
and O'Sullivan, Lorraine Julie
and Spang, Robert
and Voigt-Antons, Jan?Niklas
and Schuster, Johanna",
title="Development of a Tablet-Based Outpatient Care Application for People With Dementia: Interview and Workshop Study",
journal="JMIR Hum Factors",
year="2024",
month="Dec",
day="19",
volume="11",
pages="e59865",
keywords="dementia",
keywords="tablet application development",
keywords="multidisciplinary health care",
keywords="feasibility study",
keywords="general practitioners",
keywords="digital health care",
abstract="Background: Dementia management presents a significant challenge for individuals affected by dementia, as well as their families, caregivers, and health care providers. Digital applications may support those living with dementia; however only a few dementia-friendly applications exist. Objective: This paper emphasizes the necessity of considering multiple perspectives to ensure the high-quality development of supportive health care applications. The findings underscore the importance of incorporating input from stakeholders and the needs of affected families into application development. Method: A qualitative approach was chosen, consisting of three interviews and an expert workshop. The interviews and the workshop were recorded and transcribed, and qualitative content analysis was carried out according to the methodology described by Kuckartz with the support of MAXQDA. Results: During the development phases of the application, team meetings and discussions took place. We found that general practitioners and family caregivers play pivotal roles in the treatment and care of people with dementia, often expressing specific preferences and suggestions regarding supportive and assistive technologies. Moreover, the successful development of a useful tablet application requires robust scientific and multidisciplinary discussions and teamwork within the health care community. Conclusion: This paper underscores the necessity of including multiple scientific, clinical, and technical perspectives to ensure the high-quality development of supportive health care applications. Furthermore, adopting a spiral development approach inclusive of feedback loops is imperative for iterative refinement and enhancement of the application. International Registered Report Identifier (IRRID): RR2-10.1024/1662-9647/a000210 ",
doi="10.2196/59865",
url="https://humanfactors.jmir.org/2024/1/e59865"
}


@Article{info:doi/10.2196/60004,
author="Allen, A. Nancy
and Berg, A. Cynthia
and Iacob, Eli
and Gonzales, Rodriguez Bruno
and Butner, E. Jonathan
and Litchman, L. Michelle",
title="Examining Share plus---A Continuous Glucose Monitoring Plus Data-Sharing Intervention in Older Adults and Their Care Partners: Protocol for a Randomized Control Study",
journal="JMIR Res Protoc",
year="2024",
month="Dec",
day="16",
volume="13",
pages="e60004",
keywords="type 1 diabetes",
keywords="T1D",
keywords="older adults",
keywords="continuous glucose monitoring",
keywords="data sharing",
keywords="dyadic coping",
keywords="diabetes management",
keywords="diabetes self-care",
keywords="glucose monitoring",
keywords="quality of life",
keywords="mobile phone",
abstract="Background: Older adults with type 1 diabetes (T1D) are increasingly turning to care partners (CPs) as resources to support their diabetes management. With the rise in diabetes technologies, such as continuous glucose monitoring (CGM), there is great potential for CGM data sharing to increase CP involvement in a way that improves persons with diabetes' glucose management and reduces distress. Objective: The specific aims of this paper are to (1) evaluate the feasibility, usability, and acceptability of the Share plus intervention compared to the CGM Follow app plus diabetes self-management education and support; (2) evaluate the effect of the Share plus intervention on time-in-range (TIR; primary outcome) and diabetes distress (secondary outcome); and (3) explore differences between groups in person with diabetes and CP dyadic appraisal and coping, quality of life, diabetes self-care, and CP burden at 12 and 24 weeks and associations of dyadic variables on outcomes. Methods: This is a protocol for a feasibility, pilot randomized controlled trial. Older adults with T1D and their CP (N=80 dyads) will be randomized 1:1 to the Share plus intervention or Follow app plus diabetes self-management education. The trial will include a 12-week active intervention to determine the change in primary (TIR) and secondary (diabetes distress) outcomes, followed by a 12-week, observation-only phase to examine maintenance effects. The evaluation is guided by the Dyadic Coping Model. Patient-level effectiveness outcomes (TIR, hemoglobin A1c [HbA1c], diabetes distress, diabetes appraisal, coping, quality of life, diabetes self-care behaviors, and CP burden) will be assessed, using patient-reported outcomes measures and a home HbA1c?test kit. Patient- and CP-level acceptability and feasibility will be assessed using surveys and interviews. Quantitative feasibility, acceptability, and usability data will be described using frequencies and percentages. Acceptability will be summarized based on Likert questions and open-ended questions. Usability will be examined separately for the intervention and control groups based on the System Usability Scale, with a study benchmark of ?68 indicating good usability. TIR will be computed based on 2 weeks' worth of data at baseline (prior to intervention) and 2 weeks each after the intervention (week 12) and at follow-up (week 24). Results: Recruitment started in August 2023 and enrollment began in?November 2023. To date, 24 participants have been enrolled in this study. We expect to conclude this study in March 2026 and expect to disseminate results in March 2026. Conclusions: To our knowledge, this will be the first pilot randomized controlled trial to evaluate both feasibility and effectiveness outcomes for the web-based, platform-delivered Share plus intervention for older adults with T1D and their CP. This research has implications for CGM data sharing in other age groups with T1D and type 2 diabetes. Trial Registration: ClinicalTrials.gov NCT05937321; https://clinicaltrials.gov/study/NCT05937321 International Registered Report Identifier (IRRID): DERR1-10.2196/60004 ",
doi="10.2196/60004",
url="https://www.researchprotocols.org/2024/1/e60004"
}


@Article{info:doi/10.2196/63041,
author="Grewal, S. Karl
and Gowda-Sookochoff, Rory
and Peacock, Shelley
and Cammer, Allison
and McWilliams, A. Lachlan
and Spiteri, J. Raymond
and Haase, R. Kristen
and Harrison, Mary
and Holtslander, Lorraine
and MacRae, Rhoda
and Michael, Joanne
and Green, Shoshana
and O'Connell, E. Megan",
title="Perspectives on Technology Use in the Context of Caregiving for Persons With Dementia: Qualitative Interview Study",
journal="JMIR Form Res",
year="2024",
month="Dec",
day="13",
volume="8",
pages="e63041",
keywords="care partner",
keywords="caregiving",
keywords="dementia",
keywords="technology",
keywords="content analysis",
keywords="mobile phone",
keywords="technology adoption",
keywords="assistive technology",
keywords="support",
abstract="Background: Examining ways to support persons with dementia and their caregivers to help minimize the disease's impact on individuals, families, and society is critical. One emerging avenue for support is technology (eg, smartphones and smart homes). Objective: Given the increasing presence of technology in caregiving, it is pertinent to appreciate whether and how technology can be most useful to a care partner's everyday life. This study aims to further understand care partner technology use, attitudes, and the potential role of off-the-shelf technologies (eg, smartphones and smart homes) in supporting caregiving from the perspective of care partners for persons with dementia. Methods: We conducted a telephone cross-sectional survey using random digit dialing with 67 self-identified care partners of persons with dementia across one Canadian province. Participants were asked about attitudes toward technology, barriers to and facilitators for technology use, technology use with caregiving, and demographic information. Eight open-ended questions were analyzed using content analysis; 2 closed-ended questions about comfort with and helpfulness of technology (rated on a scale of 1 to 10) were analyzed with frequencies. From these data, an in-depth semistructured interview was created, and 10 (15\%) randomly sampled care partners from the initial collection of 67 care partners were interviewed approximately 1 year later, with responses analyzed using content analysis. Results: Frequency analysis rated on a scale of 1 to 10 suggested that care partners were comfortable with technology (wearable technology mean 7.94, SD 2.02; smart home technology mean 6.94, SD 2.09), although they rated the helpfulness of technology less strongly (mean 5.02, SD 2.85). Qualitatively, care partners described using technology for functional tasks and some caregiving. Barriers to technology use included cost, lack of knowledge, security or privacy concerns, and undesirable features of technology. Facilitators included access to support and the presence of desirable features. Some care partners described merging technology with caregiving and reported subsequent benefits. Others stated that technology could not be adopted for caregiving due to the degree of impairment, fear of negative consequences for the person living with dementia, or due to incongruity with the caregiving philosophy. Furthermore, care partners noted that their technology use either increased or was unchanged as they moved through the COVID-19 pandemic. Conclusions: The 2 analyses were conducted separately, but there was notable overlap in the data, suggesting temporal stability of identified content. Both analyses suggested care partners' relative comfort with technology and its use, but other care partners noted concerns about integrating technology and caregiving. Care partners' reports of increased technology use throughout the COVID-19 pandemic may also suggest that the pandemic impacted their perceptions of the usefulness of technology, being influenced by the requirements of their reality. Future investigations should examine how to support care partners in adopting relevant technology. ",
doi="10.2196/63041",
url="https://formative.jmir.org/2024/1/e63041"
}


@Article{info:doi/10.2196/59584,
author="Green, R. Ariel
and Boyd, M. Cynthia
and Rosado, Quiles Rosalphie
and Daddato, E. Andrea
and Gleason, S. Kathy
and Taylor McPhail, E. Tobie
and Blinka, D. Marcela
and Schoenborn, L. Nancy
and Wolff, L. Jennifer
and Bayliss, A. Elizabeth
and Boxer, S. Rebecca",
title="Improving How Caregivers of People Living With Dementia Are Identified in the Electronic Health Record: Qualitative Study and Exploratory Chart Review",
journal="JMIR Aging",
year="2024",
month="Dec",
day="13",
volume="7",
pages="e59584",
keywords="dementia",
keywords="dementia care",
keywords="caregivers",
keywords="electronic health record",
keywords="patient record",
keywords="aging",
keywords="geriatrics",
keywords="memory",
abstract="Background: Family and unpaid caregivers play a crucial role in supporting people living with dementia; yet, they are not systematically identified and documented by health systems. Objective: The aims of the study are to determine the extent to which caregivers are currently identified and documented in the electronic health record (EHR) and to elicit the perspectives of caregivers and clinical staff on how to best identify, engage, and support caregivers of people living with dementia through the EHR. Methods: People with dementia were identified based on International Classification of Diseases, Tenth Revision (ICD-10) codes or dementia medications in the EHR. A chart review of people with dementia characterized how caregiver information was documented and whether caregivers had shared access to the patient portal. Caregivers of eligible people with dementia were then recruited through mailed letters and follow-up calls to the homes of people with dementia. We conducted semistructured interviews with caregivers, clinicians, and staff involved in the care of people with dementia within 2 health systems in Maryland and Colorado. Transcripts were analyzed using a mixed inductive and deductive approach. Results: Caregivers of people with dementia (N=22) were usually identified in the ``contact information'' or ``patient contacts'' tab (n=20, 91\%) by their name and relation to the people with dementia; this tab did not specify the caregiver's role. Caregivers were also mentioned, and their roles were described to a varying degree in clinical notes (n=21, 96\%). Of the 22 caregivers interviewed, the majority (n=17, 77\%) reported that the people with dementia had additional caregivers. The presence of multiple caregivers could be gleaned from most charts (n=16, 73\%); however, this information was not captured systematically, and caregivers' individual contributions were not explicitly recorded. Interviews with 22 caregivers and 16 clinical staff revealed two major themes: (1) caregiving arrangements are complex and not systematically captured or easy to locate in the EHR and (2) health systems should develop standardized processes to obtain and document caregiver information in the EHR. Conclusions: This exploratory chart review and qualitative interview study found that people with dementia frequently have multiple caregivers, whose roles and needs are captured inconsistently in the EHR. To address this concern, caregivers and clinical staff suggested that health systems should develop and test workflows to identify caregivers, assess their needs at multiple touchpoints, and record their information in extractable EHR fields. ",
doi="10.2196/59584",
url="https://aging.jmir.org/2024/1/e59584"
}


@Article{info:doi/10.2196/63355,
author="Tonkikh, Orly
and Young, M. Heather
and Bell, F. Janice
and Famula, Jessica
and Whitney, Robin
and Mongoven, Jennifer
and Kelly, Kathleen",
title="The Implementation Outcomes and Population Impact of a Statewide IT Deployment for Family Caregivers: Mixed Methods Study",
journal="JMIR Aging",
year="2024",
month="Dec",
day="10",
volume="7",
pages="e63355",
keywords="web-based assessment",
keywords="caregiver",
keywords="technology implementation",
keywords="Consolidated Framework for Implementation Research",
keywords="CFIR",
keywords="information technology",
keywords="IT",
keywords="family caregivers",
keywords="eHealth",
abstract="Background: In 2022, the US Department of Health and Human Services released the first National Strategy to Support Family Caregivers, identifying actions for both government and the private sector. One of the major goals is to expand data, research, and evidence-based practices to support family caregivers. While IT tools are widely deployed in health care settings, they are rarely available at scale in community agencies. In 2019, the state of California recognized the importance of a statewide database and a platform to serve caregivers remotely by enhancing existing service supports and investing in a web-based platform, CareNav. Implementation commenced in early 2020 across all 11 California Caregiver Resource Centers. Objective: This paper describes the implementation strategies and outcomes of the statewide implementation of CareNav, a web-based platform to support family caregivers. Methods: The Consolidated Framework for Implementation Research (CFIR), including a recent addendum, guided this mixed methods evaluation. Two major approaches were used to evaluate the implementation process: in-depth qualitative interviews with key informants (n=82) and surveys of staff members (n=112) and caregivers (n=2229). We analyzed the interview transcripts using qualitative descriptive methods; subsequently, we identified subthemes and relationships among the ideas, mapping the findings to the CFIR addendum. For the surveys, we used descriptive statistics. Results: We present our findings about implementation strategies, implementation outcomes (ie, adoption, fidelity, and sustainment), and the impact on population health (organizational effectiveness and equity, as well as caregiver satisfaction, health, and well-being). The platform was fully adopted within 18 months, and the system is advancing toward sustainment through statewide collaboration. The deployment has augmented organizational effectiveness and quality, enhanced equity, and improved caregiver health and well-being. Conclusions: This study provides a use case for technological implementation across a multisite system with diverse community-based agencies. Future research can expand the understanding of the barriers and facilitators to achieving relevant outcomes and population impact. ",
doi="10.2196/63355",
url="https://aging.jmir.org/2024/1/e63355"
}


@Article{info:doi/10.2196/65043,
author="Seidenfeld, Justine
and Tucker, Matthew
and Harris-Gersten, Melissa
and Fix, M. Gemmae
and Guzman, Ivonne
and Sperber, R. Nina
and Hastings, N. Susan",
title="Characterizing Emergency Department Disposition Conversations for Persons Living With Dementia: Protocol for an Ethnographic Study",
journal="JMIR Res Protoc",
year="2024",
month="Dec",
day="6",
volume="13",
pages="e65043",
keywords="ethnography",
keywords="direct observations",
keywords="emergency medicine",
keywords="dementia",
keywords="caregivers",
abstract="Background: Almost 40\% of persons living with dementia make an emergency department (ED) visit each year. One of the most impactful and costly elements of their ED care is the decision to discharge or admit them to the hospital---the ``disposition'' decision. When more than one reasonable option exists regarding a health care decision, such as the decision to admit or not, it often requires a complex conversation between patients, care partners, and ED providers, ideally involving shared decision-making. However, little is known about how these conversations are conducted and the real-world context in which they take place. Best practices in ED communication and shared decision-making for persons living with dementia and their care partners are limited. Objective: This study aims to characterize current practices in ED disposition conversations for persons living with dementia and their care partners, informed by perspectives from patient and care partner participants. Methods: This study will use an ethnographic design, including direct observation methods with a semistructured data collection tool to capture the ED encounter for up to 20 patient and care partner dyads, including all discussions about dispositions. Follow-up qualitative, semistructured interviews will be conducted with persons living with dementia and their care partners to explore specific observations made during their ED encounter, and to gain insight into their perspective on their role and elements of decision support used during that conversation. Results: Data collection was initiated in October 2023, with 13 dyads recruited and observed as of July 2024. This study is expected to be completed by December 2024. Conclusions: Novel methods can offer novel insights. By combining direct observation and follow-up interviews about an ED visit, our study design will provide insights into how ED disposition occurs in real-world settings for persons living with dementia. Findings can inform more patient-centered interventions for disposition decision-making. International Registered Report Identifier (IRRID): DERR1-10.2196/65043 ",
doi="10.2196/65043",
url="https://www.researchprotocols.org/2024/1/e65043"
}


@Article{info:doi/10.2196/60050,
author="Ni, Congning
and Song, Qingyuan
and Chen, Qingxia
and Song, Lijun
and Commiskey, Patricia
and Stratton, Lauren
and Malin, Bradley
and Yin, Zhijun",
title="Sentiment Dynamics Among Informal Caregivers in Web-Based Alzheimer Communities: Systematic Analysis of Emotional Support and Interaction Patterns",
journal="JMIR Aging",
year="2024",
month="Dec",
day="4",
volume="7",
pages="e60050",
keywords="informal caregivers",
keywords="Alzheimer disease",
keywords="dementias",
keywords="web-based community",
keywords="sentiment analysis",
keywords="topic modeling",
keywords="caregiving",
keywords="carers",
keywords="family care",
keywords="support group",
keywords="peer support",
keywords="gerontology",
keywords="geriatrics",
keywords="aging",
keywords="attitudes",
keywords="opinion",
keywords="perceptions",
keywords="perspectives",
keywords="sentiment",
keywords="cognitive",
keywords="web-based communities",
keywords="Linguistic Inquiry and Word Count",
keywords="machine learning",
keywords="Valence Aware Dictionary for Sentiment Reasoning",
abstract="Background: Alzheimer disease and related dementias (ADRD) are a growing global health challenge. ADRD place significant physical, emotional, and financial burdens on informal caregivers and negatively affects their well-being. Web-based social media platforms have emerged as valuable sources of peer support for these caregivers. However, there has been limited investigation into how web-based peer support might influence their mental well-being. Objective: This study aims to examine the dynamics of sentiment scores, a major indicator of mental well-being, among informal ADRD caregivers, specifically how their sentiment changes as they participate in caregiving experience discussions within 2 ADRD web-based communities. Methods: We collected data from 2 large web-based ADRD caregiving communities, ALZConnected (from November 2011 to August 2022) and TalkingPoint (from March 2003 to November 2022). Using the Valence Aware Dictionary for Sentiment Reasoning and Linguistic Inquiry and Word Count, we calculated sentiment scores for each post and evaluated how the initial sentiment score of a topic initiator evolves within a discussion thread. Structured topic modeling and regression analysis were used to identify the primary topics consistently associated with sentiment changes within these threads. We investigated longitudinal sentiment trends to identify patterns of sentimental stability or enhancement due to prolonged engagement in web-based communities by plotting linear interpolation lines of the sentiment values of each individual user. Results: The ALZConnected dataset comprised 532,992 posts, consisting of 57,641 topic threads and 475,351 comments. The TalkingPoint dataset was composed of 846,344 posts, consisting of 81,068 topic threads and 765,276 comments. Our research revealed that topic initiators experienced a notable increase in sentiment as they engaged in subsequent discussions within their threads, with a significant uptick in positivity in the short term. This phenomenon is part of a broader trend of steadily rising positive sentiment among ADRD caregivers. Using structured topic modeling, we cataloged a diverse range of topics that included both emotional aspects, such as family emotions, and practical concerns, such as diagnosis and treatment and everyday care practices. We observed that sentiment scores were positively aligned with discussions about family and daily routines life (coefficient=3.53; P<.001), while topics related to illness (coefficient=--1.37; P<.001) and caregiving facilities (coefficient=--1.98; P<.001) tended to correlate with lower sentiment scores. This evidence highlights the significant impact that both the time of participation and the posting content have on the sentiment changes of caregivers. Conclusions: This study identifies sentiment changes among informal ADRD caregivers through their interactions in 2 extensive web-based communities. These findings emphasize the importance of early emotional support within a topic thread and demonstrate a predominantly positive sentiment in these communities over time. These further highlight the value of web-based peer support and its potential to enhance the emotional well-being of informal ADRD caregivers. ",
doi="10.2196/60050",
url="https://aging.jmir.org/2024/1/e60050",
url="http://www.ncbi.nlm.nih.gov/pubmed/39630495"
}


@Article{info:doi/10.2196/59343,
author="Longcoy, Huang Li-Ting
and Li, Chien-Ching
and Tai, Chun-Yi
and Doorenbos, Ardith",
title="Applying the Multiphase Optimization Strategy for the Development of a Culturally Tailored Resilience-Building Intervention to Facilitate Advance Care Planning Discussions for Chinese Americans: Protocol for a Survey and Qualitative Study",
journal="JMIR Res Protoc",
year="2024",
month="Nov",
day="26",
volume="13",
pages="e59343",
keywords="resilience",
keywords="Chinese Americans",
keywords="multiphase optimization strategy",
keywords="protocol",
keywords="advance care planning",
keywords="feasibility studies",
abstract="Background: Newly arrived Chinese Americans face difficulties engaging in advance care planning (ACP) discussions with their family caregivers. Avoiding such discussions and failing to complete advance directives can delay palliative and hospice care. Yet, timely palliative care is essential to maintaining the quality of life at the end of life. Currently, there is a lack of interventions to help Chinese Americans diagnosed with cancer or heart disease overcome the barriers to engaging in ACP discussions via effective use of resilience. Objective: This study aims to develop a culturally tailored, resilience-building intervention for Chinese Americans with cancer or heart disease. Methods: The development of this intervention will be guided by the 3-phase multiphase optimization strategy. In the first phase of preparation, we will examine the prespecified components of the intervention through pilot studies to understand the necessity of each component. First, a qualitative study will be conducted to understand the experiences of 10 religious or spiritual leaders who have provided pastoral or spiritual care to Chinese Americans in Chicago, United States. The interview findings will be categorized as facilitators and barriers and integrated into the development of the intervention's resilience-building guide. Second, a cross-sectional study will be conducted to assess the readiness of Chinese Americans to engage in ACP discussions with their family using surveys. Third, think-aloud interviews will be conducted to understand the experiences of 18 pairs of Chinese Americans and their family caregivers regarding the prototype of the culturally tailored, resilience-building intervention. Finally, we will examine the feasibility and acceptability of the intervention prototype along with issues related to the study's implementation process. Results: Recruitment for the qualitative study began in November 2023. As of October 2024, a total of 7 participants have been recruited, enabling a preliminary qualitative analysis to evaluate the analytical framework developed from the literature. Recruitment for the cross-sectional study began in April 2024, and as of October 2024, a total of 63 Chinese Americans have participated. The potential participant recruitment lists for the think-aloud interviews have been received, enabling recruitment to begin after the preliminary qualitative analysis is completed. Conclusions: The proposed culturally tailored, resilience-building intervention is an innovative way to facilitate ACP discussions among Chinese Americans, particularly those diagnosed with serious chronic diseases. The findings from all 3 study methods will inform the development of the proposed intervention and identify effective recruitment strategies for this underserved and hard-to-reach population to be used in future research. International Registered Report Identifier (IRRID): DERR1-10.2196/59343 ",
doi="10.2196/59343",
url="https://www.researchprotocols.org/2024/1/e59343"
}


@Article{info:doi/10.2196/52883,
author="Wiita, Farah
and Ho, K. Aileen
and Weinstein, Netta",
title="Web-Based Intervention Using Self-Compassionate Writing to Induce Positive Mood in Family Caregivers of Older Adults: Quantitative Study",
journal="JMIR Form Res",
year="2024",
month="Nov",
day="21",
volume="8",
pages="e52883",
keywords="self-compassion",
keywords="caregivers",
keywords="mindfulness",
keywords="intervention",
keywords="writing",
keywords="experimental",
abstract="Background: Caregiver burden can impact the mental health of family caregivers, but self-compassion may help reduce this impact. Brief self-compassion interventions have been shown to be useful but have not been tested in family caregivers of older adults. Objective: This study aimed to test the effects of a brief self-compassion intervention and its components (self-kindness, common humanity, and mindfulness) on mental well-being and mood when reflecting on difficult family caregiving experiences. Methods: British caregivers were recruited through a web-based panel. Three experimental studies manipulated the self-compassion intervention. In study 1 (n=206) and study 2 (n=224), participants wrote about a difficult caregiving experience while focusing on 1 self-compassion component (self-kindness, common humanity, or mindfulness). In study 3 (n=222) participants focused on all components. Self-compassion, serenity, guilt, and sadness were measured. Results: In studies 1 and 2, condition effects showed mindfulness unexpectedly lowered mood. Inconsistent and modest benefits to affect were achieved by engagement in self-kindness and common humanity in study 1 (guilt [lowered]: P=.02 and sadness [lowered]: P=.04; serenity [nonsignificantly raised]: P=.20) and also in study 2 (sadness [nonsignificantly lowered]: P=.23 and guilt [nonsignificantly lowered]: P=.26; serenity [raised]: P=.33); significant benefits for self-compassion and mood were found in study 3 (serenity [raised]: P=.01, kindness [raised]: P=.003, and common humanity [raised]: P?.001; guilt [lowered]: P<.001 and sadness [lowered]: P?.001). More intensive efforts should be made to promote self-compassion in caregivers of older adults, with caution advised when relying primarily on mindfulness approaches. Conclusions: Self-compassionate writing may be beneficial for family caregivers, but more intensive interventions are needed. Further research is needed to determine the optimal dosage and content for achieving the greatest effects. ",
doi="10.2196/52883",
url="https://formative.jmir.org/2024/1/e52883"
}


@Article{info:doi/10.2196/58517,
author="Zou, Ning
and Xie, Bo
and He, Daqing
and Hilsabeck, Robin
and Aguirre, Alyssa",
title="mHealth Apps for Dementia Caregivers: Systematic Examination of Mobile Apps",
journal="JMIR Aging",
year="2024",
month="Nov",
day="20",
volume="7",
pages="e58517",
keywords="dementia",
keywords="informal care",
keywords="mobile health applications",
keywords="tailoring",
keywords="information quality",
keywords="mobile phone",
abstract="Background: Informal caregivers of persons living with dementia are increasingly using mobile health (mHealth) apps to obtain care information. mHealth apps are seen as promising tools to better support caregivers' complex and evolving information needs. Yet, little is known about the types and quality of dementia care information that these apps provide. Is this information for caregivers individually tailored; if so, how? Objective: We aim to address the aforementioned gaps in the literature by systematically examining the types and quality of care-related information provided in publicly available apps for caregivers of persons living with dementia as well as app features used to tailor information to caregivers' information wants and situations. Methods: In September 2023, we used a multistage process to select mobile apps for caregivers of persons living with dementia. The final sample included 35 apps. We assessed (1) types of dementia care information provided in the apps, using our 3-item Alzheimer disease and related dementias daily care strategy framework, which encompasses educational information, tangible actions, and referral information; (2) quality of apps' care information, using the 11 indicators recommended by the National Library of Medicine; and (3) types of tailoring to provide personalization, feedback, and content matching, which are common tailoring strategies described in the literature. Results: Educational information was the most prevalent type of information provided (29/35 apps, 83\%), followed by information about tangible actions (18/35, 51\%) and referrals (14/35, 40\%). All apps presented their objectives clearly and avoided unrealistic or emotional claims. However, few provided information to explain whether the app's content was generated or reviewed by experts (7/35, 20\%) or how its content was selected (4/35, 11\%). Further, 6 of the 35 (17\%) apps implemented 1 type of tailoring; of them, 4 (11\%) used content matching and the other 2 (6\%) used personalization. No app used 2 types of tailoring; only 2 (6\%) used all 3 types (the third is feedback). Conclusions: Existing dementia care apps do not provide sufficient high-quality, tailored information for informal caregivers. Caregivers should exercise caution when they use dementia care apps for informational support. Future research should focus on designing dementia care apps that incorporate quality-assured, transparency-enhanced, evidence-based artificial intelligence--enabled mHealth solutions for caregivers. ",
doi="10.2196/58517",
url="https://aging.jmir.org/2024/1/e58517"
}


@Article{info:doi/10.2196/64248,
author="Mira, Joaqu{\'i}n Jos{\'e}
and Garc{\'i}a-Torres, Daniel
and Bonell-Guerrero, Mar Mar{\'i}a del
and C{\'a}ceres-Sevilla, Isabel Ana
and Ramirez-Sanz, Martina
and Mart{\'i}nez-Lleo, Rosa
and Carratal{\'a}, Concepci{\'o}n",
title="Patient Profile and Cost Savings of Long-Term Care in a Spanish Hospital: Retrospective Observational Study",
journal="Interact J Med Res",
year="2024",
month="Nov",
day="19",
volume="13",
pages="e64248",
keywords="chronicity",
keywords="length of stay",
keywords="hospital",
keywords="chronic",
keywords="long-term care",
keywords="demographics",
keywords="gerontology",
keywords="Hospitals for Acute and Chronic Long-Term Extended Stay",
keywords="HACLES",
keywords="healthcare economics",
keywords="cost savings",
abstract="Background: Long-term care hospitals have been considered an efficient response to the health care needs of an increasingly aging population. These centers are expected to contribute to better hospital bed management and more personalized care for patients needing continuous care. The evaluation of their outcomes is necessary after a sufficient period to assess their impact. Hospitals for Acute and Chronic Long-Term Extended Stay (HACLES) emerged in Spain in the late 20th century as a response to the aging population and the increase in chronic diseases. Objective: This study aimed to analyze the profile of patients treated in a HACLES, particularly analyzing gender differences, and evaluate the cost savings associated with using these centers. Methods: A retrospective study was conducted based on data from patients 65 years old or older admitted to a HACLES between 2022 and 2023. Gender, age, household cohabitation data, diagnosis and comorbidity, daily medication intake, and degree of dependency were obtained to describe the profile of patients who attended the HACLES. Data coded in SIA-Abucasis (version 37.00.03; Conseller{\'i}a Sanitat, Generalitat Valenciana; a digital medical record system used in the Valencian region) were reviewed, and descriptive statistics and comparison tests were used. The direct cost savings of HACLES admissions were calculated by comparing the daily cost of a general hospital bed with that of a HACLES bed. Results: Data from 123 patients with a mean age of 77 years were analyzed. Most (n=81, 65.9\%) had a cohabiting family member as their primary caregiver. Palliative care was the most frequent reason for admission (n=75, 61\%). The mortality rate (odds ratio [OR] 61.8, 95\% CI 53.2-70.5) was similar between men and women (OR 54.1, 95\% CI 47.8-71.5 vs OR 59.7, 95\% CI 42.2-66.0; P=.23). The cognitive assessment, using the Pfeiffer scale, improved at discharge (mean 3.2, SD 3.2 vs mean 2.5, SD 3.1; P=.003). The length of stay was significantly larger for patients who returned home compared with patients discharged to other facilities (mean 89.8, SD 58.2 versus mean 33.1, SD 43.1 days; P<.001). The direct cost savings were estimated at US \$42,614,846 per 1000 admissions. Conclusions: Patients typically treated in HACLES are older, with a high level of cognitive impairment and physical dependency, and a significant proportion are in palliative care, highlighting the importance of adapting care to the individual needs of the admitted patients. The HACLES model contributes to the sustainability of the public health system. ",
doi="10.2196/64248",
url="https://www.i-jmr.org/2024/1/e64248"
}


@Article{info:doi/10.2196/58190,
author="Beer, Thomas
and Hirt, Julian
and Adlbrecht, Laura
and Lindwedel, Ulrike
and Dammert, Matthias
and Maurer, Carola
and Kliegel, Matthias
and K{\"o}nig, Peter
and Bleses, M. Helma",
title="Exploring the Experiences of Times Without Care and Encounters in Persons With Dementia in the Swiss and German Nursing Home and Domiciliary Care Settings: Protocol for an Ethnographic Multimethods Study",
journal="JMIR Res Protoc",
year="2024",
month="Nov",
day="18",
volume="13",
pages="e58190",
keywords="dementia",
keywords="nursing homes",
keywords="home nursing",
keywords="home care services",
keywords="nursing",
keywords="ethnography",
keywords="formal caregivers",
keywords="informal caregivers",
abstract="Background: Persons with dementia spend a large part of the day without care and encounters, often without activity, as confirmed by numerous studies. However, no scientific analysis has examined how persons with dementia experience these periods. Such knowledge would be highly relevant for health care professionals and relatives to develop adequate strategies for dealing with times without care. Objective: We aim to reconstruct times without care and encounters in persons with dementia in the nursing home and domiciliary care settings and develop a typology. This typology will address the lifeworld understandings of time and the ways of arranging the time of persons with dementia. Methods: Our study is designed as an explorative, sequential multimethods investigation. We aim to systematically reconstruct times without care and encounters over a period of 36 months using ethnographic methods. Afterward, we will examine the resulting typology using a survey. To describe different social and caring cultures, practices, and arrangements, we will analyze time periods across all phases of dementia in (1) institutions exclusively caring for persons with dementia, (2) institutions where persons with dementia and those without live together, and (3) domiciliary care. For each type of care, our target is 10 intensive case observations. These observations will occur in both participatory and nonparticipatory ways. We video record selected situations and conduct situational conversations and interviews with persons with dementia and nurses. We are aiming for a minimum sample of 30 persons with dementia plus their caregivers (ie, relatives of people with dementia and professional caregivers). We will analyze data according to grounded theory methodology. Furthermore, we will perform a hermeneutic sequence analysis of selected text passages. To interpret the video material, we will conduct a video interaction analysis. To obtain complementary information about the newly developed typology, we will survey approximately 400 formal and 150 informal caregivers. We will summarize the ethnography and survey findings into an overall concept of times without care and encounters in persons with dementia. To fulfill the research objectives, our cross-disciplinary and cross-country team comprises researchers with expertise in nursing sciences, gerontology, sociology, psychology, and ethnography. Results: Our approach allows formulating statements about the nature, frequency, and prevalence of times without care and encounters in people with dementia across countries and types of care. Thus, we will contribute to making visible the lifeworld of persons with dementia. Our study commenced in March 2022 and will conclude in May 2025. The results are expected to be published in the fall of 2025. Conclusions: Our research offers points of departure for the representative investigation of times without care and encounters in persons with dementia, for the development of diagnostic instruments, and for dealing critically with possibilities of interruption (eg, by developing targeted interventions). International Registered Report Identifier (IRRID): DERR1-10.2196/58190 ",
doi="10.2196/58190",
url="https://www.researchprotocols.org/2024/1/e58190"
}


@Article{info:doi/10.2196/55643,
author="Meyer, B. Kathe
and Rohde, Gudrun
and Frivold, Gro",
title="Relatives' and Intensive Care Unit Personnel's Perspectives of Care in Organ Donation: Protocol for a Multiple Methods Study",
journal="JMIR Res Protoc",
year="2024",
month="Nov",
day="11",
volume="13",
pages="e55643",
keywords="organ procurement",
keywords="qualitative research",
keywords="public health",
keywords="patient-reported outcome",
keywords="organ donation",
keywords="organ care",
keywords="perspectives",
keywords="donors",
keywords="intensive care personnel",
keywords="Scandinavia",
keywords="donor relatives",
keywords="family satisfaction",
keywords="descriptive analysis",
keywords="comparative analysis",
keywords="organ harvesting",
abstract="Background: In organ donation from deceased donors, the interaction between the donor's relatives and intensive care personnel is an important factor. The organ donation (OD) process is complex, and patients' relatives play a vital role. Intensive care professionals need knowledge about how relatives perceive and experience the process to create a caring environment and support them throughout. Therefore, this collaborative project aims to explore both relatives' and intensive care personnel's perspectives of care in deceased organ donation in Scandinavia. Objective: This study aims to (1) investigate donor relatives' satisfaction and ICU personnel's perception of their own professional competence and (2) explore donor relatives' and ICU personnel's experiences in the OD process to design for care and support in OD. Methods: This protocol outlines a Scandinavian (Norway, Sweden, and Denmark) project, including 4 work packages. Work package 1 started in 2023 with the translation and validation of the Family Satisfaction in the Intensive Care Unit questionnaire into a Danish version and the translation of the Professional Competence in Organ Donation Questionnaire into a Swedish and Danish version. A cross-sectional survey measuring Scandinavian relatives' perception of support in and satisfaction with the organ donation process and a cross-sectional survey measuring Scandinavian intensive care personnel's competence in organ donation are the foundation for work package 2 (2024). The data from both surveys will be analyzed using descriptive and comparative analysis. The results will inform the interview guides in qualitative studies (work packages 3 and 4). Participants in the quantitative study will be invited to participate in in-depth interviews. In work package 3, in-depth interviews will be conducted to illuminate relatives' experiences in the organ donation process. The interviews will be analyzed using thematic analysis, according to Braun and Clarke. In work package 4 (2025-2026), 1 qualitative design study will be conducted to illuminate ICU personnel's experiences. Furthermore, the results from work packages 2 and 3 will inform the development of specific programs for care, support, and communication in the organ donation process. Results: The project was funded by the Norwegian Organ Donor Foundation in 2022 and Scandiatransplant in 2023. The Norwegian Nurses Organisation supports the project by funding a PhD student. The PhD student was employed by the University in Agder in May 2024. Conclusions: This project will provide new knowledge that will assist us in designing and establishing programs for care, support, and donor relatives' involvement in OD processes. International Registered Report Identifier (IRRID): PRR1-10.2196/55643 ",
doi="10.2196/55643",
url="https://www.researchprotocols.org/2024/1/e55643"
}


@Article{info:doi/10.2196/57115,
author="Jin, Xiaorong
and Zhang, Yimei
and Zhou, Min
and Zhang, Xiong
and Mei, Qian
and Bai, Yangjuan
and Wei, Wei
and Ma, Fang",
title="Experiences With mHealth Use Among Patient-Caregiver Dyads With Chronic Heart Failure: Qualitative Study",
journal="J Med Internet Res",
year="2024",
month="Oct",
day="31",
volume="26",
pages="e57115",
keywords="chronic heart failure",
keywords="informal caregiver",
keywords="mHealth",
keywords="experience",
keywords="dyad",
abstract="Background: Chronic heart failure has become a serious threat to the health of the global population, and self-management is key to treating chronic heart failure. The emergence of mobile health (mHealth) provides new ideas for the self-management of chronic heart failure in which the informal caregiver plays an important role. Current research has mainly studied the experiences with using mHealth among patients with chronic heart failure from the perspective of individual patients, and there is a lack of research from the dichotomous perspective. Objective: The aim of this study was to explore the experiences with mHealth use among patients with chronic heart failure and their informal caregivers from a dichotomous perspective. Methods: This descriptive phenomenological study from a post-positivist perspective used a dyadic interview method, and face-to-face semistructured interviews were conducted with patients with chronic heart failure and their informal caregivers. Data were collected and managed using NVivo 12 software, and data analysis used thematic analysis to identify and interpret participants' experiences and perspectives. The thematic analysis included familiarizing ourselves with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the report. Results: A total of 14 dyads of patients with chronic heart failure and their informal caregivers (13 men and 15 women) participated in this study, including 3 couples and 11 parent-child pairs. We constructed 4 key themes and their subthemes related to the experiences with mHealth use: (1) opposing experiences with mHealth as human interaction or trauma (great experience with mHealth use; trauma), (2) supplement instead of replacement (it is useful but better as a reference; offline is unavoidable sometimes), (3) both agreement and disagreement over who should be the adopter of mHealth (achieving consensus regarding who should adopt mHealth; conflict occurs when considering patients as the adopter of mHealth), (4) for better mHealth (applying mHealth with caution; suggestions for improved mHealth). Conclusions: This study reported that the experiences with mHealth use among patients with chronic heart failure and their informal caregivers were mixed, and it highlighted the human touch of mHealth and the importance of network security. These results featured mHealth as a complement to offline hospitals rather than a replacement. In the context of modern or changing Chinese culture, we encourage patients to use mHealth by themselves and their informal caregivers to provide help when necessary. In addition, we need to use mHealth carefully, and future mHealth designs should focus more on ease of use and be oriented more toward older adults. ",
doi="10.2196/57115",
url="https://www.jmir.org/2024/1/e57115"
}


@Article{info:doi/10.2196/53090,
author="Huber, Evelyn
and Harju, Erika
and Stark, Elisabeth
and Fringer, Andr{\'e}
and Preusse-Bleuler, Barbara",
title="A Real-Life Laboratory Setting for Clinical Practice, Education, and Research in Family Systems Care: Protocol for a Transformational Action Research Study",
journal="JMIR Res Protoc",
year="2024",
month="Oct",
day="30",
volume="13",
pages="e53090",
keywords="family systems care",
keywords="family nursing",
keywords="family health",
keywords="family well-being",
keywords="therapeutic conversation",
keywords="real-life laboratory",
keywords="transformational action research",
keywords="case study research",
keywords="qualitative research",
keywords="vicarious learning",
abstract="Background: Burdening health and illness issues such as physical or mental illnesses, accidents, disabilities, and life events such as birth or death influence the health and functioning of families and contribute to the complexity of care and health care costs. Considerable research has confirmed the benefits of a family systems--centered care approach for patients, family caregivers, families, and health care professionals. However, health care professionals face barriers in working with families, such as feeling unprepared. Family systems--centered therapeutic conversations support families' day-to-day coping, resilience, and health. A family systems care unit (FSCU) was recently established as a real-life laboratory at one of the Swiss Universities of Applied Sciences. In this unit, health care professionals offer therapeutic conversations to families and individual family members to support daily symptom management and functioning, soften suffering, and increase health and well-being. These conversations are observed in real time through a 1-way window by other health care professionals, students, and trainees and are recorded with video for research and education. Little is known about how therapeutic conversations contribute to meaningful changes in burdened families and the benefits of vicarious learning in a real-life laboratory setting for family systems care. Objective: In this research program, we aim to deepen our understanding of how therapeutic conversations support families and individuals experiencing burdening health and illness issues and how the FSCU laboratory setting supports the learning of students, clinical trainees, and health care professionals. Methods: Here we apply a transformational action research design, including parallel and subsequent substudies, to advance knowledge and practice in family systems care. Qualitative multiple-case study designs will be used to explore the benefits of therapeutic conversations by analyzing recordings of the therapeutic conversations. The learning processes of students, trainees, and professionals will be investigated with descriptive qualitative study designs based on single and focus group interviews. The data will be analyzed with established coding methods. Results: Therapeutic conversations have been investigated in 3 single-case studies, each involving a sequence of 3 therapeutic conversation units. Data collection regarding the second research question is planned. Conclusions: Preliminary results confirm the therapeutic conversations to support families' coping. This renders the FSCU a setting for ethically sensitive research. This program will not only support the health and well-being of families, but also contribute to relieving the financial and workforce burdens in the health and social care system. International Registered Report Identifier (IRRID): DERR1-10.2196/53090 ",
doi="10.2196/53090",
url="https://www.researchprotocols.org/2024/1/e53090"
}


@Article{info:doi/10.2196/60056,
author="Rousaki, Anastasia
and Zamani, D. Efpraxia
and Sbaffi, Laura
and Hamblin, Kate
and Black, Rachael",
title="The Digitalization of Social Care in England and Implications for Older, Unpaid Carers: Constructionist Thematic Analysis",
journal="J Med Internet Res",
year="2024",
month="Oct",
day="24",
volume="26",
pages="e60056",
keywords="social care",
keywords="England",
keywords="digitalization",
keywords="digital transformation",
keywords="unpaid care",
keywords="mobile phone",
abstract="Background: Globally, populations are aging, generating concerns about the sustainability of health and social care provision. In terms of the public provision of social care in particular, unpaid carers provide much of the support to people with disabilities and older people. In addition, there is an increased onus in many countries on digital transformation projects, in the hope that the digitalization of services can create efficiencies and savings in both costs and care labor. In England, the focus of this paper, the shift to digital services is also framed as a means to enhance choice and control for older unpaid carers, while being part of a broader offering that includes nondigital alternatives and support to mitigate digital exclusion. Objective: This study examines the impact of digitalization on older, unpaid carers---a group more likely to be both expected to engage digitally with services and at risk of digital exclusion---in England, focusing on their lived experiences in terms of caring and access to social care. Methods: We used a constructionist approach to thematic analysis, where data from 48 older unpaid carers collected through focus groups were analyzed using thematic analysis, resulting in 4 prevailing themes. Results: Our findings indicated that while unpaid carers largely acknowledge the benefits of digitalization, they also highlight several points of failure, whereby engagement with digital spaces is experienced as coercive and exacerbates feelings of exclusion. These are further worsened by government failures to address issues of connectivity, imposing additional financial burdens and complicating tasks such as benefit applications. Conclusions: In this study, we have highlighted the need for greater involvement in shaping both policy and technological solutions, which in turn will be more inclusive and aligned to the aspirations and circumstances of older carers. ",
doi="10.2196/60056",
url="https://www.jmir.org/2024/1/e60056"
}


@Article{info:doi/10.2196/63456,
author="Ashimwe, Aimerence
and Davoody, Nadia",
title="Exploring Health Care Professionals' Perspectives on the Use of a Medication and Care Support System and Recommendations for Designing a Similar Tool for Family Caregivers: Interview Study Among Health Care Professionals",
journal="JMIR Med Inform",
year="2024",
month="Oct",
day="23",
volume="12",
pages="e63456",
keywords="eHealth",
keywords="telemedicine",
keywords="mobile health",
keywords="mHealth",
keywords="medication management",
keywords="home care",
keywords="family caregivers",
keywords="mobile phone",
abstract="Background: With the aging population on the rise, the demand for effective health care solutions to address adverse drug events is becoming increasingly urgent. Telemedicine has emerged as a promising solution for strengthening health care delivery in home care settings and mitigating drug errors. Due to the indispensable role of family caregivers in daily patient care, integrating digital health tools has the potential to streamline medication management processes and enhance the overall quality of patient care. Objective: This study aims to explore health care professionals' perspectives on the use of a medication and care support system (MCSS) and collect recommendations for designing a similar tool for family caregivers. Methods: Fifteen interviews with health care professionals in a home care center were conducted. Thematic analysis was used, and 5 key themes highlighting the importance of using the MCSS tool to improve medication management in home care were identified. Results: All participants emphasized the necessity of direct communication between health care professionals and family caregivers and stated that family caregivers need comprehensive information about medication administration, patient conditions, and symptoms. Furthermore, the health care professionals recommended features and functions customized for family caregivers. Conclusions: This study underscored the importance of clear communication between health care professionals and family caregivers and the provision of comprehensive instructions to promote safe medication practices. By equipping family caregivers with essential information via a tool similar to the MCSS, a proactive approach to preventing errors and improving outcomes is advocated. ",
doi="10.2196/63456",
url="https://medinform.jmir.org/2024/1/e63456"
}


@Article{info:doi/10.2196/57393,
author="Premanandan, Shweta
and Ahmad, Awais
and Cajander, {\AA}sa
and {\AA}gerfalk, P{\"a}r
and van Gemert-Pijnen, Lisette",
title="Designing and Evaluating IT Applications for Informal Caregivers: Scoping Review",
journal="J Med Internet Res",
year="2024",
month="Oct",
day="23",
volume="26",
pages="e57393",
keywords="burnout",
keywords="caregiver",
keywords="design guidelines",
keywords="design recommendations",
keywords="evaluation",
keywords="health care services",
keywords="implementation",
keywords="informal caregiver",
keywords="long-term care",
keywords="mobile app",
keywords="facilitators",
keywords="barriers",
keywords="usability",
keywords="work-life balance",
abstract="Background: Informal caregivers, often family members or friends, play a crucial role in supporting individuals with chronic illnesses, disabilities, or age-related needs. However, the demands of caregiving can be overwhelming, leading to stress, burnout, and negative impacts on caregivers' well-being. IT applications have emerged as potential solutions to support informal caregivers, but their design and evaluation often lack a comprehensive understanding of caregivers' needs and preferences. By understanding caregivers' perspectives on these issues, this review aimed to inform the development of more effective and user-centered IT solutions that truly support caregivers' needs. Objective: The purpose of this study was to conduct a scoping review to outline design recommendations for IT applications gathered from informal caregivers. In addition, this study presents evaluations of the use of IT applications by informal caregivers. Methods: A five-step scoping review methodology was used to map relevant literature in the following manner: (1) research question identification, (2) relevant study identification, (3) selection of pertinent studies for review, (4) data charting from the selected literature, and (5) summarization and reporting of results. A structured search was conducted across the PubMed, Scopus, IEEE Xplore Digital Library, Web of Science, and ACM Digital Library databases. In addition, reference list hand searches and keyword searches in Google Scholar were undertaken. The inclusion criteria comprised research articles (journal and conference) focusing on IT applications tailored for informal caregivers, primarily qualitative studies. Two reviewers independently identified articles for review and extracted the data. Conflicts were resolved through discussion, with a third reviewer consulted if consensus could not be attained. Thematic analysis was used to analyze the data. Results: A total of 82 articles were selected for the scoping review---44 (54\%) related to design and 39 (48\%) related to evaluation of IT applications. Six overarching themes emerged related to designing IT applications: information access, support systems, streamlining care-related tasks, fostering informal caregivers' well-being, communication with formal health care professionals, and task support. Furthermore, 3 broad themes emerged related to the evaluation of IT applications for informal caregivers: facilitators of using IT applications, barriers to using IT applications, and suggestions for improving IT applications for informal caregivers. Conclusions: To our knowledge, this is the first study to map the literature on the design and evaluation of IT applications for informal caregivers. This scoping review outlines current practices and recommendations for designing and evaluating the use of IT applications for informal caregivers. It identifies 6 key design themes and 3 evaluation themes, offering valuable insights for future development in this field. These findings provide a road map for enhancing user-centric IT solutions in informal caregiver support technologies. International Registered Report Identifier (IRRID): RR2-10.2196/47650 ",
doi="10.2196/57393",
url="https://www.jmir.org/2024/1/e57393"
}


@Article{info:doi/10.2196/58356,
author="Travis, Aniyah
and O'Donnell, Arden
and Giraldo-Santiago, Natalia
and Stone, M. Sarah
and Torres, Daniel
and Adler, R. Shelley
and Vranceanu, Ana-Maria
and Ritchie, S. Christine",
title="Intervention for the Management of Neuropsychiatric Symptoms to Reduce Caregiver Stress: Protocol for the Mindful and Self-Compassion Care Intervention for Caregivers of Persons Living With Dementia",
journal="JMIR Res Protoc",
year="2024",
month="Oct",
day="11",
volume="13",
pages="e58356",
keywords="mindfulness",
keywords="caregiver",
keywords="self-compassion",
keywords="ADRD",
keywords="Alzheimer's disease and related dementias",
keywords="mental health",
abstract="Background: Stress related to Alzheimer disease and related dementias (ADRD) is common, particularly among those who care for persons with challenging behaviors and personality or mood changes. Mindfulness and self-compassion programs are efficacious for managing stress. The skills of mindfulness and self-compassion, however, must be integrated with behavioral management skills in order to effectively improve caregiver stress. Objective: In this study, we aimed to describe the development of the Mindful and Self-Compassionate Care (MASC) program, the first program that combines mindfulness and self-compassion with behavioral management skills to decrease caregiver stress, and its evaluation in the Supporting Our Caregivers in ADRD Learning (SOCIAL) study. Methods: Using the National Institutes of Health (NIH) stage model, we describe 3 phases of work encompassing NIH Stages 1A and 1B. In phase 1, we conducted 5 focus groups (N=28) of stressed individuals caring for persons with ADRD and challenging behaviors. Rapid data analysis informed the development of a 6-week online intervention. Phase 2 (NIH stage 1A) includes an open pilot (N>10) with optional exit interviews. Phase 3 (NIH stage 1B) is a feasibility randomized controlled trial of the intervention versus the Health Education Program control. Primary outcomes focus on feasibility with secondary outcomes encompassing acceptability, credibility, fidelity, and signals of preliminary efficacy. Phase 1 follows traditional recommendations for qualitative analyses (at the point of thematic saturation) which was achieved after 5 focus groups (N=28). For the phase 2 open pilot, up to 12 participants will be recruited. For the phase 3 feasibility study, recruitment of 80 caregivers will allow the assessment of feasibility benchmarks. Data for phase 1 included 5 focus groups. In phases 2 and 3, data collection will occur through REDCap (Research Electronic Data Capture; Vanderbilt University) surveys and an optional qualitative exit interview. Analyses will include hybrid inductive-deductive analyses for qualitative data and assessment of changes in our intervention targets and outcomes using t tests and correlation analyses. Results: In phase 1, caregivers reported interest in a brief, online stress management program. Participants held misconceptions about mindfulness and self-compassion, but after detailed explanation thoughts, these skills could be helpful when directly linked to implementation during caregiving routines. Phases 2 and 3 will be completed by the end of 2025. Conclusions: We describe the protocol for the Supporting Our Caregivers in ADRD Learning study, as well as the development and feasibility testing of the Mindful and Self-Compassionate Care intervention. Future work will include a fully powered efficacy-effectiveness randomized controlled trial. Trial Registration: ClinicalTrials NCT05847153; https://clinicaltrials.gov/study/NCT05847153; and ClinicalTrials.gov NCT06276023; https://clinicaltrials.gov/study/NCT06276023 International Registered Report Identifier (IRRID): DERR1-10.2196/58356 ",
doi="10.2196/58356",
url="https://www.researchprotocols.org/2024/1/e58356",
url="http://www.ncbi.nlm.nih.gov/pubmed/39392675"
}


@Article{info:doi/10.2196/50847,
author="Xie, Yanhong
and Shen, Shanshan
and Liu, Caixia
and Hong, Hong
and Guan, Huilan
and Zhang, Jingmei
and Yu, Wanqi",
title="Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Randomized Controlled Trial",
journal="JMIR Aging",
year="2024",
month="Oct",
day="4",
volume="7",
pages="e50847",
keywords="dementia",
keywords="family caregiver",
keywords="web-based training",
keywords="care burden",
keywords="care ability",
keywords="caregivers",
keywords="carer",
keywords="caregiving",
keywords="informal care",
keywords="RCT",
keywords="controlled trial",
keywords="randomized",
keywords="gerontology",
keywords="geriatric",
keywords="older adult",
keywords="elder",
keywords="elderly",
keywords="older person",
keywords="older people",
keywords="ageing",
keywords="aging",
keywords="dementia care",
keywords="randomized controlled trial",
keywords="internet-based training",
abstract="Background: As dementia progresses, patients exhibit various psychological and behavioral symptoms, imposing a significant burden on families and society, including behavioral and psychological symptoms of dementia. However, caregivers lack professional care knowledge and skills, making it difficult for them to effectively cope with the diverse challenges of caregiving. Therefore, it is necessary to provide caregivers with professional knowledge and skills guidance. Objective: This study aimed to analyze the impact of internet-based training on behavioral and psychological symptoms of dementia in patients, and explore how this training model affects the caregiving abilities and caregiving burden of the family caregivers of patients with dementia. Methods: Using a consecutive enrollment method, the Department of Geriatrics at Zhejiang Hospital (Zhejiang, China) recruited 72 informal caregivers of patients with dementia. These caregivers were randomly divided into an intervention group and a control group, with 36 participants in each group. The intervention group underwent caregiver skill training via a web-based platform, whereas the control group initially received face-to-face follow-up guidance and was subsequently offered web-based training after 6 months. To assess the effectiveness of the intervention program, we used the Neuropsychiatric Inventory Questionnaire (NPI-Q), the Chinese version of the Zarit Burden Interview (CZBI), and the Sense of Competence in Dementia Care Staff Scale (SCIDS) for evaluations conducted before the intervention, 3 months after the intervention, and 6 months after the intervention. Results: Between July 2019 and December 2020, a total of 66 patients successfully completed the intervention and follow-up. After 6 months of intervention, the NPI-Q score of the intervention group was 3.18 (SD 3.81), the CZBI score was 10.97 (SD 5.43), and the SCIDS score was 71.88 (SD 4.78). The NPI-Q score of the control group was 8.09 (SD 8.52), the CZBI score was 30.30 (SD 13.05), and the SCIDS score was 50.12 (SD 9.10). There were statistically significant differences in NPI-Q (P=.004), CZBI (P<.001), and SCIDS scores (P<.001) between the intervention group and the control group. Repeated measures analysis of variance showed that compared with before the intervention, there were statistically significant differences in CZBI (P<.001) and SCIDS (P<.001) scores 3 months after the intervention, while the difference in NPI-Q (P=.11) scores was not significant. The total scores of NPI-Q (P<.001), CZBI (P<.001), and SCIDS (P<.001) were significantly improved 6 months after the intervention. In addition, the results of the covariance analysis showed that after excluding the time effect, the web-based training intervention significantly reduced the NPI-Q score (?2.79, 95\% CI ?4.38 to ?1.19; P<.001) of patients with dementia and the CZBI score (?13.52, 95\% CI ?15.87 to ?11.16; P<.001) of caregivers, while increasing the SCIDS score (12.24, 95\% CI 9.02-15.47; P<.001). Conclusions: Internet-based training could significantly reduce the level of behavioral symptoms in older patients with dementia and alleviate the burden on caregivers, enhancing their caregiving abilities. Our results confirmed the effectiveness and feasibility of web-based training, which was of great significance in providing caregiving knowledge training for informal caregivers of persons with dementia. Trial Registration: Chinese Clinical Trial Registry ChiCTR2200057858; https://www.chictr.org.cn/showproj.html?proj=136442 ",
doi="10.2196/50847",
url="https://aging.jmir.org/2024/1/e50847"
}


@Article{info:doi/10.2196/55761,
author="Nyamathi, Adeline
and Dutt, Nikil
and Lee, Jung-Ah
and Rahmani, M. Amir
and Rasouli, Mahkameh
and Krogh, Donna
and Krogh, Erik
and Sultzer, David
and Rashid, Humayun
and Liaqat, Hamza
and Jawad, Riyam
and Azhar, Farhan
and Ahmad, Ali
and Qamar, Bilal
and Bhatti, Yasin Taha
and Khay, Chet
and Ludlow, Jocelyn
and Gibbs, Lisa
and Rousseau, Julie
and Abbasian, Mahyar
and Song, Yutong
and Jeong, Cheonkam
and Brunswicker, Sabine",
title="Establishing the Foundations of Emotional Intelligence in Care Companion Robots to Mitigate Agitation Among High-Risk Patients With Dementia: Protocol for an Empathetic Patient-Robot Interaction Study",
journal="JMIR Res Protoc",
year="2024",
month="Oct",
day="4",
volume="13",
pages="e55761",
keywords="persons with dementia",
keywords="empathy-based care companion robot",
keywords="agitation",
keywords="fall risk",
keywords="artificial intelligence",
keywords="AI",
abstract="Background: An estimated 6.7 million persons are living with dementia in the United States, a number expected to double by 2060. Persons experiencing moderate to severe dementia are 4 to 5 times more likely to fall than those without dementia, due to agitation and unsteady gait. Socially assistive robots fail to address the changing emotional states associated with agitation, and it is unclear how emotional states change, how they impact agitation and gait over time, and how social robots can best respond by showing empathy. Objective: This study aims to design and validate a foundational model of emotional intelligence for empathetic patient-robot interaction that mitigates agitation among those at the highest risk: persons experiencing moderate to severe dementia. Methods: A design science approach will be adopted to (1) collect and store granular, personal, and chronological data using Personicle (an open-source software platform developed to automatically collect data from phones and other devices), incorporating real-time visual, audio, and physiological sensing technologies in a simulation laboratory and at board and care facilities; (2) develop statistical models to understand and forecast the emotional state, agitation level, and gait pattern of persons experiencing moderate to severe dementia in real time using machine learning and artificial intelligence and Personicle; (3) design and test an empathy-focused conversation model, focused on storytelling; and (4) test and evaluate this model for a care companion robot (CCR) in the community. Results: The study was funded in October 2023. For aim 1, architecture development for Personicle data collection began with a search for existing open-source data in January 2024. A community advisory board was formed and met in December 2023 to provide feedback on the use of CCRs and provide personal stories. Full institutional review board approval was received in March 2024 to place cameras and CCRs at the sites. In March 2024, atomic marker development was begun. For aim 2, after a review of open-source data on patients with dementia, the development of an emotional classifier was begun. Data labeling was started in April 2024 and completed in June 2024 with ongoing validation. Moreover, the team established a baseline multimodal model trained and validated on healthy-person data sets, using transformer architecture in a semisupervised manner, and later retrained on the labeled data set of patients experiencing moderate to severe dementia. In April 2024, empathy alignment of large language models was initiated using prompt engineering and reinforcement learning. Conclusions: This innovative caregiving approach is designed to recognize the signs of agitation and, upon recognition, intervene with empathetic verbal communication. This proposal has the potential to have a significant impact on an emerging field of computational dementia science by reducing unnecessary agitation and falls of persons experiencing moderate to severe dementia, while reducing caregiver burden. International Registered Report Identifier (IRRID): PRR1-10.2196/55761 ",
doi="10.2196/55761",
url="https://www.researchprotocols.org/2024/1/e55761",
url="http://www.ncbi.nlm.nih.gov/pubmed/39365656"
}


@Article{info:doi/10.2196/56878,
author="Dawson, D. Walter
and Mattek, Nora
and Gothard, Sarah
and Kaye, Jeffrey
and Lindauer, Allison",
title="Ascertaining Out-of-Pocket Costs of Dementia Care: Feasibility Study of a Web-Based Weekly Survey",
journal="JMIR Form Res",
year="2024",
month="Sep",
day="25",
volume="8",
pages="e56878",
keywords="Alzheimer disease",
keywords="caregiving",
keywords="out-of-pocket costs",
keywords="behavioral and psychological symptoms of dementia",
keywords="technological interventions",
keywords="clinical trials",
keywords="dementias",
abstract="Background: Caring for a family member living with dementia is costly. A major contributor to care demands, and therefore to the costs, are the behavioral symptoms of dementia. Here, we examine the feasibility of ascertaining costs related to caregiving from weekly web-based surveys collected during a telehealth-based behavioral intervention study---Support via Technology: Living and Learning with Advancing Alzheimer Disease. Objective: This study aims to determine the feasibility and acceptability of using a web-based weekly survey to capture real-time data on out-of-pocket caregiving expenses and time commitments associated with dementia care. To examine relationships between behavioral symptoms, care partner reactivity, burden, and out-of-pocket dementia care costs. Methods: Feasibility was measured by accrual, retention, and data completion by participating care partners. Behavioral symptoms, care partner reactivity, and burden were collected before and after the intervention from 13 care partners. Weekly web-based surveys queried Support via Technology: Living and Learning with Advancing Alzheimer Disease care partners about their out-of-pocket costs associated with care-related activities. The surveys included questions on out-of-pocket costs care partners incurred from hospitalizations and emergency department use, primary care provider visits, use of paid in-home care or respite services, use of prescription medications, and use of over-the-counter medications. The surveys also queried the amount of time care partners devoted to these specific care--related activities. Results: Out-of-pocket costs of dementia care were collected via a web-based weekly survey for up to 18 months. In-home assistance was the most frequently reported type of out-of-pocket care expense and the costliest. care partners who paid for in-home assistance or respite reported more behavioral and psychological symptoms of dementia behaviors, higher reactivity, and higher burden than those who did not. Conclusions: This novel web-based weekly survey--based approach offers lessons for designing and implementing future cost-focused studies and care partner--supportive telehealth-based interventions for Alzheimer disease and related dementias (ADRD). The results correspond with the existing understanding of ADRD in that high family-related out-of-pocket costs are a typical part of the caregiving experience, and those costs likely increase with dementia severity. The results may also offer potential insights to health systems and policy makers as they seek to implement telehealth-based and related interventions that seek to better support people living with ADRD and their family care partners. Trial Registration: ClinicalTrials.gov NCT04335110; https://clinicaltrials.gov/ct2/show/NCT04335110 ",
doi="10.2196/56878",
url="https://formative.jmir.org/2024/1/e56878"
}


@Article{info:doi/10.2196/59067,
author="Campos, A. Brian
and Cummins, Emily
and Sonnay, Yves
and Brindle, E. Mary
and Cauley, E. Christy",
title="A Digital Communication Intervention to Support Older Adults and Their Care Partners Transitioning Home After Major Surgery: Protocol for a Qualitative Research Study",
journal="JMIR Res Protoc",
year="2024",
month="Aug",
day="28",
volume="13",
pages="e59067",
keywords="mHealth",
keywords="geriatric",
keywords="surgery",
keywords="care partner",
keywords="qualitative study",
keywords="digital intervention",
keywords="intervention development",
abstract="Background: Older adults (aged ?65 years) account for approximately 30\% of inpatient procedures in the United States. After major surgery, they are at high risk of a slow return to their previous functional status, loss of independence, and complications like delirium. With the development and refinement of Enhanced Recovery After Surgery protocols, older patients often return home much earlier than historically anticipated. This put a larger burden on care partners, close family or friends who partner with the patient and guide them through recovery. Without adequate preparation, both patients and their care partners may experience poor long-term outcomes. Objective: This study aimed to improve and streamline recovery for patients aged ?65 years by exploring the communication needs of patients and their care partners. Information from this study will be used to inform an intervention developed to address these needs and define processes for its implementation across surgical clinics. Methods: This qualitative research protocol has two aims. First, we will define patient and care partner needs and perspectives related to digital health innovation. To achieve this aim, we will recruit dyads of patients (aged ?65 years) who underwent elective major surgery 30-90 days prior and their respective care partners (aged ?18 years). Participants will complete individual interviews and surveys to obtain demographic data, characterize their perceptions of the surgical experience, identify intervention targets, and assess for the type of intervention modality that would be most useful. Next, we will explore clinician perspectives, tools, and strategies to develop a blueprint for a digital intervention. To achieve this aim, clinicians (eg, geriatricians, surgeons, and nurses) will be recruited for focus groups to identify current obstacles affecting surgical outcomes for older patients, and we will review current assessments and tools used in their clinical practice. A hybrid deductive-inductive approach will be undertaken to identify relevant themes. Insights from both clinicians and patient-care partners will guide the development of a digital intervention strategy to support older patients and their care partners after surgery. Results: This study has been approved by the Massachusetts General Hospital and Harvard Institutional Review Boards. Recruitment began in December 2023 for the patient and care partner interviews. As of August 2024, over half of the interviews have been performed, deidentified, and transcribed. Clinician recruitment is ongoing, with no focus groups conducted yet. The study is expected to be completed by fall 2024. Conclusions: This study will help create a scalable digital health option for older patients undergoing major surgery and their care partners. We aim to enhance our understanding of patient recovery needs; improve communication with surgical teams; and ultimately, reduce the overall burden on patients, their care partners, and health care providers through real-time assessment. International Registered Report Identifier (IRRID): DERR1-10.2196/59067 ",
doi="10.2196/59067",
url="https://www.researchprotocols.org/2024/1/e59067",
url="http://www.ncbi.nlm.nih.gov/pubmed/39196629"
}


@Article{info:doi/10.2196/55252,
author="Hudson, Peter
and Francis, Jill
and Cohen, Joachim
and Kapp, Suzanne
and De Abreu Lourenco, Richard
and Beatty, Lisa
and Gray, Kathleen
and Jefford, Michael
and Juraskova, Ilona
and Northouse, Laurel
and de Vleminck, Aline
and Chang, Sungwon
and Yates, Patsy
and Athan, Sophy
and Baptista, Shaira
and Klaic, Marlena
and Philip, Jennifer",
title="Improving the Well-Being of People With Advanced Cancer and Their Family Caregivers: Protocol for an Effectiveness-Implementation Trial of a Dyadic Digital Health Intervention (FOCUSau)",
journal="JMIR Res Protoc",
year="2024",
month="Aug",
day="13",
volume="13",
pages="e55252",
keywords="advanced cancer",
keywords="clinical trial",
keywords="digital health intervention",
keywords="palliative care",
keywords="health economics",
keywords="implementation science",
keywords="wellbeing",
keywords="well-being",
keywords="cancer",
keywords="family caregiver",
keywords="family caregivers",
keywords="caregivers",
keywords="caregiver",
keywords="digital health",
keywords="quality of life",
keywords="dyad",
keywords="self-administered",
keywords="web-based intervention",
keywords="web-based",
keywords="Australian",
keywords="Australia",
keywords="efficacy",
keywords="cost-effectiveness",
keywords="psychoeducation",
abstract="Background: Advanced cancer significantly impacts patients' and family caregivers' quality of life. When patients and caregivers are supported concurrently as a dyad, the well-being of each person is optimized. Family, Outlook, Communication, Uncertainty, Symptom management (FOCUS) is a dyadic, psychoeducational intervention developed in the United States, shown to improve the well-being and quality of life of patients with advanced cancer and their primary caregivers. Originally, a nurse-delivered in-person intervention, FOCUS has been adapted into a self-administered web-based intervention for European delivery. Objective: The aims of this study are to (1) adapt FOCUS to the Australian context (FOCUSau); (2) evaluate the effectiveness of FOCUSau in improving the emotional well-being and self-efficacy of patients with advanced cancer and their primary caregiver relative to usual care control group; (3) compare health care use between the intervention and control groups; and (4) assess the acceptability, feasibility, and scalability of FOCUSau in order to inform future maintainable implementation of the intervention within the Australian health care system. Methods: FOCUS will be adapted prior to trial commencement, using an iterative stakeholder feedback process to create FOCUSau. To examine the efficacy and cost-effectiveness of FOCUSau and assess its acceptability, feasibility, and scalability, we will undertake a hybrid type 1 implementation study consisting of a phase 3 (clinical effectiveness) trial along with an observational implementation study. Participants will include patients with cancer who are older than 18 years, able to access the internet, and able to identify a primary support person or caregiver who can also be approached for participation. The sample size consists of 173 dyads in each arm (ie, 346 dyads in total). Patient-caregiver dyad data will be collected at 3 time points---baseline (T0) completed prerandomization; first follow-up (T1; N=346) at 12 weeks post baseline; and second follow-up (T2) at 24 weeks post baseline. Results: The study was funded in March 2022. Recruitment commenced in July 2024. Conclusions: If shown to be effective, this intervention will improve the well-being of patients with advanced cancer and their family caregivers, regardless of their location or current level of health care support. Trial Registration: ClinicalTrials.gov NCT06082128; https://clinicaltrials.gov/study/NCT06082128 International Registered Report Identifier (IRRID): PRR1-10.2196/55252 ",
doi="10.2196/55252",
url="https://www.researchprotocols.org/2024/1/e55252"
}


@Article{info:doi/10.2196/64127,
author="DuBose, Logan
and Fan, Qiping
and Fisher, Louis
and Hoang, Minh-Nguyet
and Salha, Diana
and Lee, Shinduk
and Ory, G. Marcia
and Falohun, Tokunbo",
title="Development and Evaluation of a Web-Based Platform for Personalized Educational and Professional Assistance for Dementia Caregivers: Proposal for a Mixed Methods Study",
journal="JMIR Res Protoc",
year="2024",
month="Aug",
day="7",
volume="13",
pages="e64127",
keywords="Alzheimer disease",
keywords="dementia caregivers",
keywords="digital platform",
keywords="financial planning",
keywords="legal planning",
keywords="usability study",
keywords="evaluation",
keywords="older adults",
keywords="caregiver support",
abstract="Background: Alzheimer disease (AD) and AD-related dementia are prevalent concerns for aging populations. With a growing older adult population living in the United States, the number of people living with dementia is expected to grow, posing significant challenges for informal caregivers. The mental and physical burdens associated with caregiving highlight the importance of developing novel and effective resources to support caregivers. However, technology solutions designed to address their needs often face low adoption rates due to usability issues and a lack of contextual relevance. This study focuses on developing a web-based platform providing financial and legal planning information and education for dementia caregivers and evaluating the platform's usability and adoptability. Objective: The goal of this project is to create a web-based platform that connects caregivers with personalized and easily accessible resources. This project involves industrial, academic, and community partners and focuses on two primary aims: (1) developing a digital platform using a Dementia Care Personalization Algorithm and assessing feasibility in a pilot group of caregivers, and (2) evaluating the acceptability and usability of the digital platform across different racial or ethnic populations. This work will aid in the development of technology-based interventions to reduce caregiver burden. Methods: The phase I study follows an iterative Design Thinking approach, involving at least 25 dementia caregivers as a user feedback panel to assess the platform's functionality, aesthetics, information, and overall quality using the adapted Mobile Application Rating Scale. Phase II is a usability study with 300 dementia caregivers in Texas (100 African American, 100 Hispanic or Latinx, and 100 non-Hispanic White). Participants will use the digital platform for about 4 weeks and evaluate its usefulness and ease of use through the Technology Acceptance Survey. Results: The study received funding from the National Institute on Aging on September 3, 2021. Ethical approval for phase I was obtained from the Texas A\&M University Institutional Review Board on December 8, 2021, with data collection starting on January 1, 2022, and concluding on May 31, 2022. Phase I results were published on September 5, 2023, and April 17, 2024, respectively. On June 21, 2023, ethical approval for human subjects for phase II was granted, and participant recruitment began on July 1, 2023. Conclusions: Upon completing these aims, we expect to deliver a widely accessible digital platform tailored to assist dementia caregivers with financial and legal challenges by connecting them to personalized, contextually relevant information and resources in Texas. If successful, we plan to work with caregiving organizations to scale and sustain the platform, addressing the needs of the growing population living with dementia. International Registered Report Identifier (IRRID): DERR1-10.2196/64127 ",
doi="10.2196/64127",
url="https://www.researchprotocols.org/2024/1/e64127"
}


@Article{info:doi/10.2196/49576,
author="Pauly, Theresa
and L{\"u}scher, Janina
and Wilhelm, Olivia Lea
and Amrein, Alexandra Melanie
and Boateng, George
and Kowatsch, Tobias
and Fleisch, Elgar
and Bodenmann, Guy
and Scholz, Urte",
title="Using Wearables to Study Biopsychosocial Dynamics in Couples Who Cope With a Chronic Health Condition: Ambulatory Assessment Study",
journal="JMIR Mhealth Uhealth",
year="2024",
month="Aug",
day="5",
volume="12",
pages="e49576",
keywords="couples",
keywords="wearables",
keywords="type II diabetes",
keywords="heart rate",
keywords="biopsychosocial dynamics",
keywords="physiological linkage",
keywords="mobile health",
keywords="technology",
keywords="social support",
keywords="chronic disease",
keywords="usability",
keywords="utility",
keywords="mHealth",
abstract="Background: Technology has become an integral part of our everyday life, and its use to manage and study health is no exception. Romantic partners play a critical role in managing chronic health conditions as they tend to be a primary source of support. Objective: This study tests the feasibility of using commercial wearables to monitor couples' unique way of communicating and supporting each other and documents the physiological correlates of interpersonal dynamics (ie, heart rate linkage). Methods: We analyzed 617 audio recordings of 5-minute duration (384 with concurrent heart rate data) and 527 brief self-reports collected from 11 couples in which 1 partner had type II diabetes during the course of their typical daily lives. Audio data were coded by trained raters for social support. The extent to which heart rate fluctuations were linked among couples was quantified using cross-correlations. Random-intercept multilevel models explored whether cross-correlations might differ by social contexts and exchanges. Results: Sixty percent of audio recordings captured speech between partners and partners reported personal contact with each other in 75\% of self-reports. Based on the coding, social support was found in 6\% of recordings, whereas at least 1 partner self-reported social support about half the time (53\%). Couples, on average, showed small to moderate interconnections in their heart rate fluctuations (r=0.04-0.22). Couples also varied in the extent to which there was lagged linkage, that is, meaning that changes in one partner's heart rate tended to precede changes in the other partner's heart rate. Exploratory analyses showed that heart rate linkage was stronger (1) in rater-coded partner conversations (vs moments of no rater-coded partner conversations: rdiff=0.13; P=.03), (2) when partners self-reported interpersonal contact (vs moments of no self-reported interpersonal contact: rdiff=0.20; P<.001), and (3) when partners self-reported social support exchanges (vs moments of no self-reported social support exchange: rdiff=0.15; P=.004). Conclusions: Our study provides initial evidence for the utility of using wearables to collect biopsychosocial data in couples managing a chronic health condition in daily life. Specifically, heart rate linkage might play a role in fostering chronic disease management as a couple. Insights from collecting such data could inform future technology interventions to promote healthy lifestyle engagement and adaptive chronic disease management. International Registered Report Identifier (IRRID): RR2-10.2196/13685 ",
doi="10.2196/49576",
url="https://mhealth.jmir.org/2024/1/e49576"
}


@Article{info:doi/10.2196/54633,
author="Parmanto, Bambang
and Aryoyudanta, Bayu
and Soekinto, Wilbert Timothius
and Setiawan, Agus I. Made
and Wang, Yuhan
and Hu, Haomin
and Saptono, Andi
and Choi, Kyung Yong",
title="A Reliable and Accessible Caregiving Language Model (CaLM) to Support Tools for Caregivers: Development and Evaluation Study",
journal="JMIR Form Res",
year="2024",
month="Jul",
day="31",
volume="8",
pages="e54633",
keywords="large language model",
keywords="caregiving",
keywords="caregiver",
keywords="informal care",
keywords="carer",
keywords="GPT",
keywords="language model",
keywords="LLM",
keywords="elderly",
keywords="aging",
keywords="ChatGPT",
keywords="machine learning",
keywords="natural language processing",
keywords="NLP",
abstract="Background: In the United States, 1 in 5 adults currently serves as a family caregiver for an individual with a serious illness or disability. Unlike professional caregivers, family caregivers often assume this role without formal preparation or training. Thus, there is an urgent need to enhance the capacity of family caregivers to provide quality care. Leveraging technology as an educational tool or an adjunct to care is a promising approach that has the potential to enhance the learning and caregiving capabilities of family caregivers. Large language models (LLMs) can potentially be used as a foundation technology for supporting caregivers. An LLM can be categorized as a foundation model (FM), which is a large-scale model trained on a broad data set that can be adapted to a range of different domain tasks. Despite their potential, FMs have the critical weakness of ``hallucination,'' where the models generate information that can be misleading or inaccurate. Information reliability is essential when language models are deployed as front-line help tools for caregivers. Objective: This study aimed to (1) develop a reliable caregiving language model (CaLM) by using FMs and a caregiving knowledge base, (2) develop an accessible CaLM using a small FM that requires fewer computing resources, and (3) evaluate the model's performance compared with a large FM. Methods: We developed a CaLM using the retrieval augmented generation (RAG) framework combined with FM fine-tuning for improving the quality of FM answers by grounding the model on a caregiving knowledge base. The key components of the CaLM are the caregiving knowledge base, a fine-tuned FM, and a retriever module. We used 2 small FMs as candidates for the foundation of the CaLM (LLaMA [large language model Meta AI] 2 and Falcon with 7 billion parameters) and adopted a large FM (GPT-3.5 with an estimated 175 billion parameters) as a benchmark. We developed the caregiving knowledge base by gathering various types of documents from the internet. We focused on caregivers of individuals with Alzheimer disease and related dementias. We evaluated the models' performances using the benchmark metrics commonly used in evaluating language models and their reliability for providing accurate references with their answers. Results: The RAG framework improved the performance of all FMs used in this study across all measures. As expected, the large FM performed better than the small FMs across all metrics. Interestingly, the small fine-tuned FMs with RAG performed significantly better than GPT 3.5 across all metrics. The fine-tuned LLaMA 2 with a small FM performed better than GPT 3.5 (even with RAG) in returning references with the answers. Conclusions: The study shows that a reliable and accessible CaLM can be developed using small FMs with a knowledge base specific to the caregiving domain. ",
doi="10.2196/54633",
url="https://formative.jmir.org/2024/1/e54633",
url="http://www.ncbi.nlm.nih.gov/pubmed/39083337"
}


@Article{info:doi/10.2196/53289,
author="Tennant, Ryan
and Allana, Sana
and Mercer, Kate
and Burns, M. Catherine",
title="Capturing Home Care Information Management and Communication Processes Among Caregivers of Older Adults: Qualitative Study to Inform Technology Design",
journal="JMIR Form Res",
year="2024",
month="Jul",
day="4",
volume="8",
pages="e53289",
keywords="aged",
keywords="caregivers",
keywords="patient safety",
keywords="communication",
keywords="patient care team",
keywords="information management",
keywords="digital technology",
keywords="human-centered design",
keywords="mobile phone",
abstract="Background: The demand for complex home care is increasing with the growing aging population and the ongoing COVID-19 pandemic. Family and hired caregivers play a critical role in providing care for individuals with complex home care needs. However, there are significant gaps in research informing the design of complex home care technologies that consider the experiences of family and hired caregivers collectively. Objective: The objective of this study was to explore the health documentation and communication experiences of family and hired caregivers to inform the design and adoption of new technologies for complex home care. Methods: The research involved semistructured interviews with 15 caregivers, including family and hired caregivers, each of whom was caring for an older adult with complex medical needs in their home in Ontario, Canada. Due to COVID-19--related protection measures, the interviews were conducted via Teams (Microsoft Corp). The interview guide was informed by the cognitive work analysis framework, and the interview was conducted using storytelling principles of narrative medicine to enhance knowledge. Inductive thematic analysis was used to code the data and develop themes. Results: Three main themes were developed. The first theme described how participants were continually updating the caregiver team, which captured how health information, including their communication motivations and intentions, was shared among family and hired caregiver participants. The subthemes included binder-based health documentation, digital health documentation, and communication practices beyond the binder. The second theme described how participants were learning to improve care and decision-making, which captured how they acted on information from various sources to provide care. The subthemes included developing expertise as a family caregiver and tailoring expertise as a hired caregiver. The third theme described how participants experienced conflicts within caregiver teams, which captured the different struggles arising from, and the causes of, breakdowns in communication and coordination between family and hired caregiver participants. The subthemes included 2-way communication and trusting the caregiver team. Conclusions: This study highlights the health information communication and coordination challenges and experiences that family and hired caregivers face in complex home care settings for older adults. Given the challenges of this work domain, there is an opportunity for appropriate digital technology design to improve complex home care. When designing complex home care technologies, it will be critical to include the overlapping and disparate perspectives of family and hired caregivers collectively providing home care for older adults with complex needs to support all caregivers in their vital roles. ",
doi="10.2196/53289",
url="https://formative.jmir.org/2024/1/e53289",
url="http://www.ncbi.nlm.nih.gov/pubmed/38963695"
}


@Article{info:doi/10.2196/47565,
author="Ansaldo, In{\'e}s Ana
and Masson-Trottier, Mich{\`e}le
and Delacourt, Barbara
and Dubuc, Jade
and Dub{\'e}, Catherine",
title="Efficacy of COMPAs, an App Designed to Support Communication Between Persons Living With Dementia in Long-Term Care Settings and Their Caregivers: Mixed Methods Implementation Study",
journal="JMIR Aging",
year="2024",
month="Jul",
day="4",
volume="7",
pages="e47565",
keywords="dementia",
keywords="communication",
keywords="caregivers",
keywords="technology",
keywords="burden",
keywords="mixed methods design",
keywords="quality of life",
keywords="mobile phone",
keywords="tablet",
abstract="Background: Persons living with dementia experience autonomy loss and require caregiver support on a daily basis. Dementia involves a gradual decline in communication skills, leading to fewer interactions and isolation for both people living with dementia and their caregivers, negatively impacting the quality of life for both members of the dyad. The resulting stress and burden on caregivers make them particularly susceptible to burnout. Objective: This study aims to examine the efficacy of Communication Proches Aidants (COMPAs), an app designed following the principles of person-centered and emotional communication, which is intended to improve well-being in persons living with dementia and caregivers and reduce caregiver burden. Methods: In this implementation study, volunteer caregivers in 2 long-term care facilities (n=17) were trained in using COMPAs and strategies to improve communication with persons living with dementia. Qualitative and quantitative analyses, semistructured interviews, and questionnaires were completed before and after 8 weeks of intervention with COMPAs. Results: Semistructured interviews revealed that all caregivers perceived a positive impact following COMPAs interventions, namely, improved quality of communication and quality of life among persons living with dementia and caregivers. Improved quality of life was also supported by a statistically significant reduction in the General Health Questionnaire-12 scores (caregivers who improved: 9/17, 53\%; z=2.537; P=.01). COMPAs interventions were also associated with a statistically significant increased feeling of personal accomplishment (caregivers improved: 11/17, 65\%; t15=2.430; P=.03; d=0.61 [medium effect size]). Conclusions: COMPAs intervention improved well-being in persons living with dementia and their caregivers by developing person-centered communication within the dyad, increasing empathy, and reducing burden in caregivers although most caregivers were unfamiliar with technology. The results hold promise for COMPAs interventions in long-term care settings. Larger group-controlled studies with different populations, in different contexts, and at different stages of dementia will provide a clearer picture of the benefits of COMPAs interventions. ",
doi="10.2196/47565",
url="https://aging.jmir.org/2024/1/e47565",
url="http://www.ncbi.nlm.nih.gov/pubmed/38963691"
}


@Article{info:doi/10.2196/49431,
author="Welsh, T. Ellen
and McIntosh, E. Jennifer
and Vuong, An
and Cloud, G. Zoe C.
and Hartley, Eliza
and Boyd, H. James",
title="Design of Digital Mental Health Platforms for Family Member Cocompletion: Scoping Review",
journal="J Med Internet Res",
year="2024",
month="Jul",
day="3",
volume="26",
pages="e49431",
keywords="family therapy",
keywords="family",
keywords="couples",
keywords="eHealth",
keywords="digital health",
keywords="platform",
keywords="platforms",
keywords="e--mental health",
keywords="internet interventions",
keywords="psychosocial interventions",
keywords="psychosocial",
keywords="synthesis",
keywords="review methods",
keywords="review methodology",
keywords="scoping",
keywords="mental health",
keywords="utility",
keywords="design",
keywords="family caregiver",
keywords="caregiver",
keywords="parent",
keywords="child",
keywords="development",
keywords="cocompletion",
keywords="access",
keywords="accessibility",
keywords="engagement",
keywords="families",
keywords="dyad",
keywords="dyadic",
keywords="user engagement",
keywords="user experience",
keywords="mobile phone",
abstract="Background: The COVID-19 pandemic placed an additional mental health burden on individuals and families, resulting in widespread service access problems. Digital mental health interventions suggest promise for improved accessibility. Recent reviews have shown emerging evidence for individual use and early evidence for multiusers. However, attrition rates remain high for digital mental health interventions, and additional complexities exist when engaging multiple family members together. Objective: As such, this scoping review aims to detail the reported evidence for digital mental health interventions designed for family use with a focus on the build and design characteristics that promote accessibility and engagement and enable cocompletion by families. Methods: A systematic literature search of MEDLINE, Embase, PsycINFO, Web of Science, and CINAHL databases was conducted for articles published in the English language from January 2002 to March 2024. Eligible records included empirical studies of digital platforms containing some elements designed for cocompletion by related people as well as some components intended to be completed without therapist engagement. Platforms were included in cases in which clinical evidence had been documented. Results: Of the 9527 papers reviewed, 85 (0.89\%) met the eligibility criteria. A total of 24 unique platforms designed for co-use by related parties were identified. Relationships between participants included couples, parent-child dyads, family caregiver--care recipient dyads, and families. Common platform features included the delivery of content via structured interventions with no to minimal tailoring or personalization offered. Some interventions provided live contact with therapists. User engagement indicators and findings varied and included user experience, satisfaction, completion rates, and feasibility. Our findings are more remarkable for what was absent in the literature than what was present. Contrary to expectations, few studies reported any design and build characteristics that enabled coparticipation. No studies reported on platform features for enabling cocompletion or considerations for ensuring individual privacy and safety. None examined platform build or design characteristics as moderators of intervention effect, and none offered a formative evaluation of the platform itself. Conclusions: In this early era of digital mental health platform design, this novel review demonstrates a striking absence of information about design elements associated with the successful engagement of multiple related users in any aspect of a therapeutic process. There remains a large gap in the literature detailing and evaluating platform design, highlighting a significant opportunity for future cross-disciplinary research. This review details the incentive for undertaking such research; suggests design considerations when building digital mental health platforms for use by families; and offers recommendations for future development, including platform co-design and formative evaluation. ",
doi="10.2196/49431",
url="https://www.jmir.org/2024/1/e49431"
}


@Article{info:doi/10.2196/58440,
author="Garcia-Calvente, Mar Mar{\'i}a del
and Mora, Juanita Diana
and Del R{\'i}o-Lozano, Mar{\'i}a",
title="Gender Inequalities of Health and Quality of Life in Informal Caregivers in Spain: Protocol for the Longitudinal and Multicenter CUIDAR-SE Study",
journal="JMIR Res Protoc",
year="2024",
month="Jul",
day="2",
volume="13",
pages="e58440",
keywords="caregivers",
keywords="gender equity",
keywords="sex differences",
keywords="health status",
keywords="quality of life",
keywords="longitudinal studies",
keywords="multicenter studies",
abstract="Background: The aging population and increased disability prevalence in Spain have heightened the demand for long-term care. Informal caregiving, primarily performed by women, plays a crucial role in this scenario. This protocol outlines the CUIDAR-SE study, focusing on the gender-specific impact of informal caregiving on health and quality of life among caregivers in Andalusia and the Basque Country from 2013 to 2024. Objective: This study aims to analyze the gender differences in health and quality of life indicators of informal caregivers residing in 2 Spanish autonomous communities (Granada, Andalusia, and Gipuzkoa; Basque Country) and their evolution over time, in relation to the characteristics of caregivers, the caregiving situation, and support received. Methods: The CUIDAR-SE study uses a longitudinal, multicenter design across 3 phases, tracking health and quality of life indicators among informal caregivers. Using a questionnaire adapted to the Spanish context that uses validated scales and multilevel analysis, the research captures changes in caregivers' experiences amid societal crises, notably the 2008 economic crisis and the COVID-19 pandemic. A multistage randomized cluster sampling technique is used to minimize study design effects. Results: Funding for the CUIDAR-SE study was in 3 phases starting in January 2013, 2017, and 2021, spanning a 10-year period. Data collection commenced in 2013 and continued annually, except for 2016 and 2020 due to financial and pandemic-related challenges. As of March 2024, a total of 1294 participants have been enrolled, with data collection ongoing for 2023. Initial data analysis focused on gender disparities in caregiver health, quality of life, burden, perceived needs, and received support, with results from phase I published. Currently, analysis is ongoing for phases II and III, as well as longitudinal analysis across all phases. Conclusions: This protocol aims to provide comprehensive insights into caregiving dynamics and caregivers' experiences over time, as well as understand the role of caregiving on gender inequality in health, considering regional variations. Despite limitations in participant recruitment, focusing on registered caregivers, the study offers a detailed exploration of the health impacts of caregiving in Spain. The incorporation of a gender perspective and the examination of diverse contextual factors enrich the study's depth, contributing significantly to the discourse on caregiving health complexities in Spain. International Registered Report Identifier (IRRID): DERR1-10.2196/58440 ",
doi="10.2196/58440",
url="https://www.researchprotocols.org/2024/1/e58440"
}


@Article{info:doi/10.2196/54074,
author="Gomes, Cunha Mateus
and Castro, Robert
and Silva Serra, Willian
and Sagica de Vasconcelos, Jhak
and Parente, Andressa
and Botelho, Pinheiro Eli{\~a}
and Ferreira, Glenda
and Sousa, Fabianne",
title="Demographic Profile, Health, and Associated Factors of Family Caregivers and Functionality of Hospitalized Older Adults: Cross-Sectional, Exploratory, and Descriptive Study",
journal="JMIR Form Res",
year="2024",
month="Jun",
day="21",
volume="8",
pages="e54074",
keywords="family caregiver",
keywords="older adult",
keywords="hospitalization",
keywords="functionality",
keywords="caregiver",
keywords="health",
abstract="Background: The longevity of the world population can contribute to an increase in hospitalizations and, consequently, to the emergence of functional limitations, resulting in the need for family caregivers. Hospitalized older adults may become dependent and require more care, increasing the burden on family caregivers. Thus, the nursing team in the hospital environment faces a new situation: an increase in the number of older adults occupying hospital beds and the presence of their family caregivers. Objective: We aimed to analyze the association between the demographic variables of interest and the self-rated health of family caregivers and to describe the functionality of older adults hospitalized in a university hospital in the Amazonian context. Methods: This cross-sectional, quantitative, exploratory, and descriptive study was carried out through individual interviews with 98 interviewees, divided into 49 family caregivers and 49 older adults hospitalized in the surgical clinic sector of a university hospital in Brazil between February and March 2023. Demographic data and health conditions were collected from family caregivers, and to describe the functionality of hospitalized older adults, the Barthel Index was applied. Descriptive (frequency and percentage) and inferential analyses were used, and the student t test was applied. The significance level of 5\% was adopted. Results: Among the 49 family caregivers, the majority were women (n=40, 81.6\%) with an average age of 46.9 (SD 13.3) years. Most were single (n=28, 57.1\%) and had completed an average level of education (n=26, 53.1\%). Additionally, 25 (51\%) caregivers were caring for their parents. Regarding health conditions, respondents self-assessed their health as good (25/49, 51\%; P=.01), and they considered that their health status was not affected by the provision of care (36/49, 73.5\%; P=.01). There was a significant association between demographic variables (ie, gender, age, and education) and self-assessment of family caregivers (P=.01, P=.01, and P=.04, respectively). Of the 49 older adults hospitalized, the majority (n=31, 63.2\%) were men, with a mean age of 69.2 (SD 7.12) years. Regarding the assessment of functionality, most older adults were classified as having mild dependence on care (n=23, 46.9\%), specifically in the age group between 60 and 69 years (21/49, 67.8\%). Conclusions: The data revealed that female gender, age, and education of family caregivers contributed favorably to the provision of care to hospitalized older adults with a lower degree of functional dependence. It is important to emphasize that during the older adult's hospitalization, the family caregiver should not be seen as a delegation of responsibilities or as a complement of human resources to assist in their recovery. Health professionals need to implement assertive interventions so that the family caregiver functions as a therapeutic resource. ",
doi="10.2196/54074",
url="https://formative.jmir.org/2024/1/e54074"
}


@Article{info:doi/10.2196/59294,
author="Pickett, C. Andrew
and Valdez, Danny
and Sinclair, L. Kelsey
and Kochell, J. Wesley
and Fowler, Boone
and Werner, E. Nicole",
title="Social Media Discourse Related to Caregiving for Older Adults Living With Alzheimer Disease and Related Dementias: Computational and Qualitative Study",
journal="JMIR Aging",
year="2024",
month="Jun",
day="19",
volume="7",
pages="e59294",
keywords="caregiving",
keywords="dementia",
keywords="social support",
keywords="social media",
keywords="Reddit",
abstract="Background: In the United States, caregivers of people living with Alzheimer disease and Alzheimer disease--related dementias (AD/ADRD) provide >16 billion hours of unpaid care annually. These caregivers experience high levels of stress and burden related to the challenges associated with providing care. Social media is an emerging space for individuals to seek various forms of support. Objective: We aimed to explore the primary topics of conversation on the social media site Reddit related to AD/ADRD. We then aimed to explore these topics in depth, specifically examining elements of social support and behavioral symptomology discussed by users. Methods: We first generated an unsupervised topic model from 6563 posts made to 2 dementia-specific subreddit forums (r/Alzheimers and r/dementia). Then, we conducted a manual qualitative content analysis of a random subset of these data to further explore salient themes in the corpus. Results: The topic model with the highest overall coherence score (0.38) included 10 topics, including caregiver burden, anxiety, support-seeking, and AD/ADRD behavioral symptomology. Qualitative analyses provided added context, wherein users sought emotional and informational support for many aspects of the care experience, including assistance in making key care-related decisions. Users expressed challenging and complex emotions on Reddit, which may be taboo to express in person. Conclusions: Reddit users seek many different forms of support, including emotional and specific informational support, from others on the internet. Users expressed a variety of concerns, challenges, and behavioral symptoms to manage as part of the care experience. The unique (ie, anonymous and moderated) nature of the forum allowed for a safe space to express emotions free from documented caregiver stigma. Additional support structures are needed to assist caregivers of people living with AD/ADRD. ",
doi="10.2196/59294",
url="https://aging.jmir.org/2024/1/e59294",
url="http://www.ncbi.nlm.nih.gov/pubmed/38896462"
}


@Article{info:doi/10.2196/52361,
author="Moreno, I. Patricia
and Worch, M. Sarah
and Thomas, L. Jessica
and Nguyen, L. Rebecca
and Medina, N. Heidy
and Penedo, J. Frank
and Moskowitz, T. Judith
and Yanez, Betina
and Kircher, M. Sheetal
and Kundu, D. Shilajit
and Flury, C. Sarah
and Cheung, O. Elaine",
title="Quality of Life in Patients and Their Spouses and Cohabitating Partners in the Year Following a Cancer Biopsy (the Couples Cope Study): Protocol for a Prospective Observational Study",
journal="JMIR Res Protoc",
year="2024",
month="Jun",
day="18",
volume="13",
pages="e52361",
keywords="quality of life",
keywords="cancer",
keywords="biopsy",
keywords="couples",
keywords="dyads",
keywords="caregiver",
keywords="patients",
keywords="patient",
keywords="cancer biopsy",
keywords="spouse",
keywords="spouses",
keywords="partner",
keywords="partners",
keywords="diagnostic",
keywords="diagnostic procedure",
keywords="feasibility of recruitment",
keywords="recruitment",
keywords="prostate biopsy",
keywords="breast biopsy",
keywords="screening",
keywords="electronic health record",
keywords="survey",
keywords="surveys",
abstract="Background: Receiving a diagnosis of cancer is a profound and often very stressful experience. Few studies have prospectively recruited patients prior to receiving a new diagnosis of cancer and included spouses or partners. Objective: The aim of the Couples Cope Study is to understand the impact of undergoing a diagnostic biopsy and receiving a new cancer diagnosis on quality of life (QoL) in both patients and their spouses or partners, as well as on the quality of their relationship. This protocol paper describes the study design and assesses the feasibility of recruitment and retention. Methods: Study staff reviewed the schedules of collaborating physicians using specific encounter codes to identify patients scheduled for breast or prostate biopsies. Potential participants were prescreened via the electronic health record and sent a recruitment letter at least 2 to 3 weeks prior to their biopsy procedure. Patients subsequently underwent a phone screening to determine eligibility. Patients who enrolled provided study staff with contact information for their spouses or partners. All consent forms were completed online. Surveys were completed online prior to receiving the biopsy results (baseline), and at 1, 3, 6, and 9 months after the biopsy. Study staff engaged in ongoing, personalized contact with participants and sent assessment completion reminders via phone and email. Results: A total of 2294 patients undergoing a breast or prostate biopsy were identified and 69\% (n=1582) were eligible for phone screening following electronic health record prescreening. Of the 431 patients who underwent phone screening, 75\% (n=321) were eligible to participate. Of the eligible patients, 72\% (n=231) enrolled and 82\% (n=190) of enrolled patients had an accompanying partner or spouse who also enrolled. A total of 77\% (34/44) of patients who received a cancer diagnosis and 72\% (26/36) of their spouses or partners were retained through 9 months, while 80\% (53/66) of patients who received a benign diagnosis and 68\% (42/62) of their partners were retained. Conclusions: Prospective recruitment of patients undergoing diagnostic biopsy and their partners is feasible and requires both strategic collaboration with providers and concerted prescreening and recruitment efforts by study staff. Importantly, this study was able to conduct all study activities online without disrupting clinical workflow and without requiring patients and their spouses or partners to come into the laboratory. Consideration should be given to the ratio of biopsies to cancer diagnoses, which can vary significantly by cancer type. Prospective studies are needed and can inform our ability to provide effective support earlier to couples facing a possible cancer diagnosis. Future studies should examine other tumor types that have received less attention in QoL studies, include behavioral and neurobiological assessments beyond self-report measures, and follow couples beyond 9 months in order to examine long-term effects on QoL. International Registered Report Identifier (IRRID): DERR1-10.2196/52361 ",
doi="10.2196/52361",
url="https://www.researchprotocols.org/2024/1/e52361",
url="http://www.ncbi.nlm.nih.gov/pubmed/38889402"
}


@Article{info:doi/10.2196/55216,
author="Mildrum Chana, Sof{\'i}a
and {\'A}lvarez, Lorel{\'i}
and Poe, Abigail
and Bibriescas, Natashia
and Wang, Hai Danny
and DiFiglia, Stephanie
and Azuero, Andr{\'e}s
and Crowe, Michael
and Puga, Frank",
title="The Daily Experiences of Hispanic and Latinx Dementia Caregivers Study: Protocol for a Fully Remote Daily Diary Observational Cohort Study",
journal="JMIR Res Protoc",
year="2024",
month="Jun",
day="13",
volume="13",
pages="e55216",
keywords="dementia",
keywords="caregivers",
keywords="Hispanic",
keywords="Latinx",
keywords="mental health",
keywords="daily diary",
keywords="longitudinal",
keywords="protocol",
keywords="observational cohort study",
keywords="cohort",
keywords="Alzheimer's disease",
keywords="Alzheimer",
keywords="stress",
keywords="burden",
keywords="loneliness",
keywords="well-being",
abstract="Background: The Hispanic and Latinx community is disproportionately affected by Alzheimer disease and related dementias (ADRDs). In the United States, approximately 8.5 million caregivers of individuals with ADRDs identify as Hispanic and Latinx people, and caregiving-related stress and burden place caregivers at elevated risk for poor mental health outcomes, as well as loneliness and social isolation. To date, there is limited knowledge about the daily stress experiences of Hispanic and Latinx caregivers. Given this knowledge gap, it is critical to examine how personal, cultural, and contextual factors influence daily stress, mental health, and resilience over time among Hispanic and Latinx ADRD caregivers. Objective: The goal of this protocol report is to present the rationale, methodology, planned analytical strategy, progress completed to date, and implications of future findings for ``Nuestros D{\'i}as'' (Spanish for ``our days''), a fully remote daily diary (DD), observational cohort study examining the day-to-day experiences of Hispanic and Latinx ADRD caregivers. Methods: The study will recruit a cohort of up to 500 Hispanic and Latinx caregivers of individuals living with ADRD. Participants will complete measures assessing contextual, individual-level, and cultural factors at 3 intervals (enrollment, 6 months, and 12 months). Each of the timepoints will be followed by 21 days of DD surveys to report on daily stress, stress moderators, and mental health variables. Results: Data collection began in March 2023 and is projected to end in December 2026. As of March 2024, we have enrolled 60 caregivers in the Nuestros D{\'i}as study, 78.9\% (n=15) of whom are Spanish speakers. The current completion rate for DD surveys is 79.4\%, averaging approximately 18 surveys out of 21 completed. We expect to enroll 10 to 15 participants per month moving forward to achieve our enrollment goal. Conclusions: Results from this study will identify which Hispanic and Latinx ADRD caregivers, and under what circumstances, appear to be at the greatest risk of experiencing poor mental health outcomes over time. This study represents a critical step forward in providing key guidance to develop effective, culturally sensitive interventions to support the health and well-being of Hispanic and Latinx ADRD caregivers, a historically underrepresented and underserved population in aging and caregiving research. International Registered Report Identifier (IRRID): DERR1-10.2196/55216 ",
doi="10.2196/55216",
url="https://www.researchprotocols.org/2024/1/e55216",
url="http://www.ncbi.nlm.nih.gov/pubmed/38869929"
}


@Article{info:doi/10.2196/55169,
author="Yin, Zhijun
and Stratton, Lauren
and Song, Qingyuan
and Ni, Congning
and Song, Lijun
and Commiskey, Patricia
and Chen, Qingxia
and Moreno, Monica
and Fazio, Sam
and Malin, Bradley",
title="Perceptions and Utilization of Online Peer Support Among Informal Dementia Caregivers: Survey Study",
journal="JMIR Aging",
year="2024",
month="May",
day="31",
volume="7",
pages="e55169",
keywords="informal dementia caregiver",
keywords="online health community",
keywords="social support",
keywords="survey",
keywords="online peer support",
keywords="caregiving challenges",
abstract="Background: Informal dementia caregivers are those who care for a person living with dementia and do not receive payment (eg, family members, friends, or other unpaid caregivers). These informal caregivers are subject to substantial mental, physical, and financial burdens. Online communities enable these caregivers to exchange caregiving strategies and communicate experiences with other caregivers whom they generally do not know in real life. Research has demonstrated the benefits of peer support in online communities, but this research is limited, focusing merely on caregivers who are already online community users. Objective: We aimed to investigate the perceptions and utilization of online peer support through a survey. Methods: Following the Andersen and Newman Framework of Health Services Utilization and using REDCap (Research Electronic Data Capture), we designed and administered a survey to investigate the perceptions and utilization of online peer support among informal dementia caregivers. Specifically, we collected types of information that influence whether an informal dementia caregiver accesses online peer support: predisposing factors, which refer to the sociocultural characteristics of caregivers, relationships between caregivers and people living with dementia, and belief in the value of online peer support; enabling factors, which refer to the logistic aspects of accessing online peer support (eg, eHealth literacy and access to high-speed internet); and need factors, which are the most immediate causes of seeking online peer support. We also collected data on caregivers' experiences with accessing online communities. We distributed the survey link on November 14, 2022, within two online locations: the Alzheimer's Association website (as an advertisement) and ALZConnected (an online community organized by the Alzheimer's Association). We collected all responses on February 23, 2023, and conducted a regression analysis to identifyn factors that were associated with accessing online peer support. Results: We collected responses from 172 dementia caregivers. Of these participants, 140 (81.4\%) completed the entire survey. These caregivers were aged 19 to 87 (mean 54, SD 13.5) years, and a majority were female (123/140, 87.9\%) and White (126/140, 90\%). Our findings show that the behavior of accessing any online community was significantly associated with participants' belief in the value of online peer support (P=.006). Moreover, of the 40 non--online community caregivers, 33 (83\%) had a belief score above 24---the score that was assigned when a neutral option was selected for each belief question. The most common reasons for not accessing any online community were having no time to do so (14/140, 10\%) and having insufficient online information--searching skills (9/140, 6.4\%). Conclusions: Our findings suggest that online peer support is valuable, but practical strategies are needed to assist informal dementia caregivers who have limited time or online information--searching skills. ",
doi="10.2196/55169",
url="https://aging.jmir.org/2024/1/e55169"
}


@Article{info:doi/10.2196/51695,
author="Seuren, Martinus Lucas
and Shaw, Sara",
title="How Informal Carers Support Video Consulting in Physiotherapy, Heart Failure, and Cancer: Qualitative Study Using Linguistic Ethnography",
journal="J Med Internet Res",
year="2024",
month="May",
day="31",
volume="26",
pages="e51695",
keywords="delivery of health care",
keywords="remote consultation",
keywords="carer",
keywords="telemedicine",
keywords="videoconferencing",
keywords="language",
keywords="linguistics",
keywords="gestures",
keywords="physiotherapy",
keywords="heart failure",
keywords="care",
keywords="patient care",
keywords="feasibility",
keywords="safety",
keywords="communication",
keywords="mobile phone",
abstract="Background: Informal carers play an important role in the everyday care of patients and the delivery of health care services. They aid patients in transportation to and from appointments, and they provide assistance during the appointments (eg, answering questions on the patient's behalf). Video consultations are often seen as a way of providing patients with easier access to care. However, few studies have considered how this affects the role of informal carers and how they are needed to make video consultations safe and feasible. Objective: This study aims to identify how informal carers, usually friends or family who provide unpaid assistance, support patients and clinicians during video consultations. Methods: We conducted an in-depth analysis of the communication in a sample of video consultations drawn from 7 clinical settings across 4 National Health Service Trusts in the United Kingdom. The data set consisted of 52 video consultation recordings (of patients with diabetes, gestational diabetes, cancer, heart failure, orthopedic problems, long-term pain, and neuromuscular rehabilitation) and interviews with all participants involved in these consultations. Using Linguistic Ethnography, which embeds detailed analysis of verbal and nonverbal communication in the context of the interaction, we examined the interactional, technological, and clinical work carers did to facilitate video consultations and help patients and clinicians overcome challenges of the remote and video-mediated context. Results: Most patients (40/52, 77\%) participated in the video consultation without support from an informal carer. Only 23\% (12/52) of the consultations involved an informal carer. In addition to facilitating the clinical interaction (eg, answering questions on behalf of the patient), we identified 3 types of work that informal carers did: facilitating the use of technology; addressing problems when the patient could not hear or understand the clinician; and assisting with physical examinations, acting as the eyes, ears, and hands of the clinician. Carers often stayed in the background, monitoring the consultation to identify situations where they might be needed. In doing so, copresent carers reassured patients and helped them conduct the activities that make up a consultation. However, carers did not necessarily help patients solve all the challenges of a video consultation (eg, aiming the camera while laying hands on the patient during an examination). We compared cases where an informal carer was copresent with cases where the patient was alone, which showed that carers provided an important safety net, particularly for patients who were frail and experienced mobility difficulties. Conclusions: Informal carers play a critical role in making video consultations safe and feasible, particularly for patients with limited technological experience or complex needs. Guidance and research on video consulting need to consider the availability and work done by informal carers and how they can be supported in providing patients access to digital health care services. ",
doi="10.2196/51695",
url="https://www.jmir.org/2024/1/e51695",
url="http://www.ncbi.nlm.nih.gov/pubmed/38819900"
}


@Article{info:doi/10.2196/53141,
author="Cohen Elimelech, Ortal
and Rosenblum, Sara
and Tsadok-Cohen, Michal
and Meyer, Sonya
and Ferrante, Simona
and Demeter, Naor",
title="Three Perspectives on Older Adults' Daily Performance, Health, and Technology Use During COVID-19: Focus Group Study",
journal="JMIR Aging",
year="2024",
month="May",
day="30",
volume="7",
pages="e53141",
keywords="daily activity",
keywords="health",
keywords="technology use",
keywords="older adult",
keywords="qualitative study",
keywords="focus group",
keywords="COVID-19",
abstract="Background: During COVID-19 lockdowns, older adults' engagement in daily activities was severely affected, causing negative physical and mental health implications. Technology flourished as a means of performing daily activities in this complex situation; however, older adults often struggled to effectively use these opportunities. Despite the important role of older adults' social environments---including their families and health professionals---in influencing their technology use, research into their unique perspectives is lacking. Objective: This study aimed to explore the daily activity performance, health, and technology use experiences of healthy independent Israeli adults (aged ?65 years) during COVID-19 from a 3-dimensional perspective: older adults, older adults' family members, and health professionals. Methods: Nine online focus groups, averaging 6-7 participants per group, were conducted with older adults, family members, and health professionals (N=59). Data were analyzed using thematic analysis and constant comparative methods. Results: The intertwining of daily activity performance and health emerged as a central theme, with differences between the groups. Older adults prioritized their self-fulfilling routines based on motivation and choice, especially in social-familial activities. In contrast, family members and health professionals focused on serious physical and mental health COVID-19--related consequences. A consensus among all three groups revealed the meaningful role of technology use during this period in bridging functional limitations. Participants delved into technology's transformative power, focusing on the need for technology to get engaged in daily activities. Conclusions: This study illustrates the profound interplay between daily activity performances, physical and mental health, and technology use, using a 3-dimensional approach. Its focus on technology's uses and benefits sheds light on what older adults need to increase their technology use. Interventions for improving digital activity performance can be tailored to meet older adults' needs and preferences by focusing on motivational and preference-related activities. ",
doi="10.2196/53141",
url="https://aging.jmir.org/2024/1/e53141"
}


@Article{info:doi/10.2196/56916,
author="Albright, Liam
and Ko, Woojin
and Buvanesh, Meyhaa
and Haraldsson, Harald
and Polubriaginof, Fernanda
and Kuperman, J. Gilad
and Levy, Michelle
and Sterling, R. Madeline
and Dell, Nicola
and Estrin, Deborah",
title="Opportunities and Challenges for Augmented Reality in Family Caregiving: Qualitative Video Elicitation Study",
journal="JMIR Form Res",
year="2024",
month="May",
day="30",
volume="8",
pages="e56916",
keywords="augmented reality",
keywords="extended reality",
keywords="family caregiver",
keywords="home care",
keywords="virtual care",
keywords="telemedicine",
keywords="telehealth",
keywords="oncology",
keywords="artificial intelligence",
keywords="mobile phone",
abstract="Background: Although family caregivers play a critical role in care delivery, research has shown that they face significant physical, emotional, and informational challenges. One promising avenue to address some of caregivers' unmet needs is via the design of digital technologies that support caregivers' complex portfolio of responsibilities. Augmented reality (AR) applications, specifically, offer new affordances to aid caregivers as they perform care tasks in the home. Objective: This study explored how AR might assist family caregivers with the delivery of home-based cancer care. The specific objectives were to shed light on challenges caregivers face where AR might help, investigate opportunities for AR to support caregivers, and understand the risks of AR exacerbating caregiver burdens. Methods: We conducted a qualitative video elicitation study with clinicians and caregivers. We created 3 video elicitations that offer ways in which AR might support caregivers as they perform often high-stakes, unfamiliar, and anxiety-inducing tasks in postsurgical cancer care: wound care, drain care, and rehabilitative exercise. The elicitations show functional AR applications built using Unity Technologies software and Microsoft Hololens2. Using elicitations enabled us to avoid rediscovering known usability issues with current AR technologies, allowing us to focus on high-level, substantive feedback on potential future roles for AR in caregiving. Moreover, it enabled nonintrusive exploration of the inherently sensitive in-home cancer care context. Results: We recruited 22 participants for our study: 15 clinicians (eg, oncologists and nurses) and 7 family caregivers. Our findings shed light on clinicians' and caregivers' perceptions of current information and communication challenges caregivers face as they perform important physical care tasks as part of cancer treatment plans. Most significant was the need to provide better and ongoing support for execution of caregiving tasks in situ, when and where the tasks need to be performed. Such support needs to be tailored to the specific needs of the patient, to the stress-impaired capacities of the caregiver, and to the time-constrained communication availability of clinicians. We uncover opportunities for AR technologies to potentially increase caregiver confidence and reduce anxiety by supporting the capture and review of images and videos and by improving communication with clinicians. However, our findings also suggest ways in which, if not deployed carefully, AR technologies might exacerbate caregivers' already significant burdens. Conclusions: These findings can inform both the design of future AR devices, software, and applications and the design of caregiver support interventions based on already available technology and processes. Our study suggests that AR technologies and the affordances they provide (eg, tailored support, enhanced monitoring and task accuracy, and improved communications) should be considered as a part of an integrated care journey involving multiple stakeholders, changing information needs, and different communication channels that blend in-person and internet-based synchronous and asynchronous care, illness, and recovery. ",
doi="10.2196/56916",
url="https://formative.jmir.org/2024/1/e56916",
url="http://www.ncbi.nlm.nih.gov/pubmed/38814705"
}


@Article{info:doi/10.2196/53098,
author="Greeley, Brian
and Chung, Seohyeon Sally
and Graves, Lorraine
and Song, Xiaowei",
title="Combating Barriers to the Development of a Patient-Oriented Frailty Website",
journal="JMIR Aging",
year="2024",
month="May",
day="28",
volume="7",
pages="e53098",
keywords="frailty",
keywords="frailty website",
keywords="patient-oriented assessment",
keywords="community-dwelling older adults",
keywords="internet security",
keywords="privacy",
keywords="barrier",
keywords="barriers",
keywords="development",
keywords="implementation",
keywords="patient-oriented",
keywords="internet",
keywords="virtual health resource",
keywords="community dwelling",
keywords="older adult",
keywords="older adults",
keywords="health care professional",
keywords="caregiver",
keywords="caregivers",
keywords="technology",
keywords="real-time",
keywords="monitoring",
keywords="aging",
keywords="ageing",
doi="10.2196/53098",
url="https://aging.jmir.org/2024/1/e53098"
}


@Article{info:doi/10.2196/41202,
author="Collins-Pisano, Caroline
and Leggett, N. Amanda
and Gambee, David
and Fortuna, L. Karen",
title="Usability, Acceptability, and Preliminary Effectiveness of a Peer-Delivered and Technology-Supported Mental Health Intervention for Family Caregivers of People With Dementia: Field Usability Study",
journal="JMIR Hum Factors",
year="2024",
month="May",
day="27",
volume="11",
pages="e41202",
keywords="family caregivers",
keywords="dementia",
keywords="peer support",
keywords="technology",
keywords="mobile phone",
abstract="Background: Family caregivers of people with dementia are critical to the quality of life of care recipients and the sustainability of health care systems but face an increased risk of emotional distress and negative physical and mental health outcomes. Objective: The purpose of this study was to examine the usability, acceptability, and preliminary effectiveness of a technology-based and caregiver-delivered peer support program, the Caregiver Remote Education and Support (CARES) smartphone or tablet app. Methods: A total of 9 adult family caregivers of people with dementia received the CARES intervention, and 3 former family caregivers of people with dementia were trained to deliver it. Quantitative data were collected at baseline and at the end of the 2-week field usability study. Qualitative data were also collected at the end of the 2-week field usability study. Results: The field usability study demonstrated that a 2-week peer-delivered and technology-supported mental health intervention designed to improve burden, stress, and strain levels was experienced by former and current family caregivers of people with dementia as acceptable. Current family caregivers rated CARES as above average in usability, whereas the caregiver peer supporters rated CARES as marginally usable. CARES was associated with non--statistically significant improvements in burden, stress, and strain levels. Conclusions: This field usability study demonstrated that it is possible to train former family caregivers of people with dementia to use technology to deliver a mental health intervention to current family caregivers of people with dementia. Future studies would benefit from a longer trial; a larger sample size; a randomized controlled design; and a control of covariables such as stages of dementia, years providing care, and severity of dementia symptoms. ",
doi="10.2196/41202",
url="https://humanfactors.jmir.org/2024/1/e41202",
url="http://www.ncbi.nlm.nih.gov/pubmed/38801660"
}


@Article{info:doi/10.2196/46108,
author="Kelley, M. Marjorie
and Powell, Tia
and Camara, Djibril
and Shah, Neha
and Norton, M. Jenna
and Deitelzweig, Chelsea
and Vaidy, Nivedha
and Hsiao, Chun-Ju
and Wang, Jing
and Bierman, S. Arlene",
title="Mobile Health Apps, Family Caregivers, and Care Planning: Scoping Review",
journal="J Med Internet Res",
year="2024",
month="May",
day="23",
volume="26",
pages="e46108",
keywords="caregivers",
keywords="carers",
keywords="informal caregivers",
keywords="family caregivers",
keywords="mHealth applications",
keywords="telemedicine",
keywords="mobile health",
keywords="mHealth",
keywords="eHealth",
keywords="digital health",
keywords="apps",
keywords="chronic condition",
keywords="caregiver",
keywords="application",
keywords="support",
keywords="clinicians",
keywords="development",
keywords="electronic health record",
keywords="implementation",
keywords="mobile phone",
abstract="Background: People living with multiple chronic conditions (MCCs) face substantial challenges in planning and coordinating increasingly complex care. Family caregivers provide important assistance for people with MCCs but lack sufficient support. Caregiver apps have the potential to help by enhancing care coordination and planning among the health care team, including patients, caregivers, and clinicians. Objective: We aim to conduct a scoping review to assess the evidence on the development and use of caregiver apps that support care planning and coordination, as well as to identify key factors (ie, needs, barriers, and facilitators) related to their use and desired caregiver app functionalities. Methods: Papers intersecting 2 major domains, mobile health (mHealth) apps and caregivers, that were in English and published from 2015 to 2021 were included in the initial search from 6 databases and gray literature and ancestry searches. As per JBI (Joanna Briggs Institute) Scoping Review guidelines and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews), 2 authors independently screened full texts with disagreements resolved by a third author. Working in pairs, the authors extracted data using a pilot-tested JBI extraction table and compared results for consensus. Results: We identified 34 papers representing 25 individual studies, including 18 (53\%) pilot and feasibility studies, 13 (38\%) qualitative studies, and 2 experimental or quasi-experimental studies. None of the identified studies assessed an intervention of a caregiver app for care planning and coordination for people with MCCs. We identified important caregiver needs in terms of information, support, and care coordination related to both caregiving and self-care. We compiled desired functionalities and features enabling apps to meet the care planning and care coordination needs of caregivers, in particular, the integration of caregiver roles into the electronic health record. Conclusions: Caregiver needs identified through this study can inform developers and researchers in the design and implementation of mHealth apps that integrate with the electronic health record to link caregivers, patients, and clinicians to support coordinated care for people with MCCs. In addition, this study highlights the need for more rigorous research on the use of mHealth apps to support caregivers in care planning and coordination. ",
doi="10.2196/46108",
url="https://www.jmir.org/2024/1/e46108",
url="http://www.ncbi.nlm.nih.gov/pubmed/38781588"
}


@Article{info:doi/10.2196/51789,
author="Washington, T. Karla
and Oliver, Parker Debra
and Donehower, K. Allison
and White, Patrick
and Benson, J. Jacquelyn
and Lyons, G. Patrick
and Demiris, George",
title="Accessibility, Relevance, and Impact of a Symptom Monitoring Tool for Home Hospice Care: Theory Elaboration and Qualitative Assessment",
journal="JMIR Hum Factors",
year="2024",
month="May",
day="23",
volume="11",
pages="e51789",
keywords="caregivers",
keywords="home care services",
keywords="hospice care",
keywords="signs and symptoms",
keywords="technology",
keywords="mobile phone",
abstract="Background: Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience. Objective: We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application. Methods: We engaged ENVISION users (N=34) in a qualitative study in which data were collected via direct observation, think-aloud techniques, and responses to open-ended queries. Data were analyzed via theory elaboration and basic qualitative description. Results: Accessibility, relevance, and impact were identified as 3 essential considerations in evaluating a health system's digital inclusivity. Study findings generally supported ENVISION's digital inclusivity, particularly concerning its perceived relevance to the work of family caregivers and hospice clinicians and its potentially positive impact on symptom management and quality of life. Limitations to ENVISION's digital inclusivity centered around issues of accessibility, particularly operability among individuals with limited technological knowledge and skills. Conclusions: The Accessibility, Relevance, and Impact conceptual framework of digital inclusivity for health information systems can help identify opportunities to strengthen the digital inclusivity of tools, such as ENVISION, intended for use by a broad and diverse range of users. ",
doi="10.2196/51789",
url="https://humanfactors.jmir.org/2024/1/e51789",
url="http://www.ncbi.nlm.nih.gov/pubmed/38781581"
}


@Article{info:doi/10.2196/52389,
author="Scheibl, Fiona
and Boots, Lizzy
and Eley, Ruth
and Fox, Christopher
and Gracey, Fergus
and Harrison Dening, Karen
and Oyebode, Jan
and Penhale, Bridget
and Poland, Fiona
and Ridel, Gemma
and West, Juniper
and Cross, L. Jane",
title="Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design",
journal="JMIR Form Res",
year="2024",
month="May",
day="22",
volume="8",
pages="e52389",
keywords="adaptation",
keywords="caregivers",
keywords="dementia",
keywords="intervention",
keywords="web-based resources",
keywords="United Kingdom",
keywords="co-design",
keywords="web-based intervention",
keywords="support",
keywords="carer",
keywords="caregiver",
keywords="family carer",
keywords="community-based",
keywords="services",
keywords="web-based support",
keywords="staff",
keywords="self-help, web-based",
abstract="Background: Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom. Objective: This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom. Methods: Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party. Results: Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB's offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context. Conclusions: AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff. Trial Registration: ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555 ",
doi="10.2196/52389",
url="https://formative.jmir.org/2024/1/e52389",
url="http://www.ncbi.nlm.nih.gov/pubmed/38776139"
}


@Article{info:doi/10.2196/46414,
author="Szczepura, Ala
and Khan, Jahan Amir
and Wild, Deidre
and Nelson, Sara
and Woodhouse, Sonja
and Collinson, Mark",
title="Digital Adoption by an Organization Supporting Informal Caregivers During COVID-19 Pandemic Showing Impact on Service Use, Organizational Performance, and Carers' Well-Being: Retrospective Population-Based Database Study With Embedded User Survey",
journal="JMIR Aging",
year="2024",
month="May",
day="13",
volume="7",
pages="e46414",
keywords="digital adoption",
keywords="COVID-19",
keywords="informal caregivers",
keywords="carer support organization",
keywords="organization performance",
keywords="integrated care systems",
keywords="care systems",
keywords="health policy",
keywords="aging in place",
keywords="digital divide",
abstract="Background: The COVID-19 pandemic has catalyzed a move from face-to-face to digital delivery of services by hospitals and primary care. However, little is known about the impact of digital transformation on organizations supporting unpaid caregivers. Since the start of the COVID-19 pandemic, the value of care provided by such informal caregivers is estimated to be {\textsterling}111 billion (US\$ 152.7 billion) in England. Objective: This study aims to analyze service uptake patterns (including digital service options) over the pandemic period in an English caregivers' support organization covering a population of 0.98 million; measure changes in organizational performance, service efficiency, and quality; and identify the views of caregivers on service provision and future digital delivery. Methods: This was a retrospective analysis of the use of digital versus nondigital support services (January 2019 to June 2021) by caregivers in city and rural geographic areas. We compared organizational performance and service quality indicators for 2 financial years (2019-2020 and 2020-2021). A survey was conducted to identify barriers and facilitators to digital service uptake, the computer proficiency of caregivers (the Computer Proficiency Questionnaire, 12-item version), and preferences for future digital service provision. Quantitative data were analyzed using Stata 13 (StataCorp LLC). Thematic analysis was used for open-text survey responses. Results: The number of caregivers registered with the organization rose from 14,817 in 2019 to 20,237 in 2021. Monthly contacts rose from 1929 to 6741, with remote contacts increasing from 48.89\% (943/1929) to 86.68\% (5843/6741); distinctive patterns were observed for city versus rural caregivers. There was an increase in one-to-one contacts (88.8\%) and caregiver assessments (20.9\%), with no expansion in staffing. Service quality indicators showed an improvement in 5 of 8 variables (all P<.05). The 152 carers completing the survey had similar demographics to all registered caregivers. The Computer Proficiency Questionnaire, 12-item version, mean score of 25.61 (SD 4.40) indicated relatively high computer proficiency. The analysis of open-text responses identified a preference for the organization to continue to offer face-to-face services as well as web-based options. The digital services that were the most highly rated were carers' well-being assessments, support needs checks, and peer support groups. Conclusions: Our findings show that staff in the caregiver support organization were agile in adapting their services to digital delivery while dealing with increased numbers of registered clients and higher monthly contacts, all without obvious detriment to service quality. Caregivers indicated a preference for blended services, even while recording high computer proficiency. Considering the economic importance of unpaid caregivers, more attention should be given to organizations funded to provide support for them and to the potential for technology to enhance caregivers' access to, and engagement with, such services. ",
doi="10.2196/46414",
url="https://aging.jmir.org/2024/1/e46414",
url="http://www.ncbi.nlm.nih.gov/pubmed/38739915"
}


@Article{info:doi/10.2196/53255,
author="Vick, B. Judith
and Golden, P. Blair
and Cantrell, Sarah
and Harris-Gersten, Louise Melissa
and Selmanoff, R. Mollie
and Hastings, Nicole Susan
and Oyesanya, O. Tolu
and Goldstein, M. Karen
and Van Houtven, Courtney",
title="Family Involvement in the Care of Hospitalized Older Adults: Protocol for a Qualitative Evidence Synthesis",
journal="JMIR Res Protoc",
year="2024",
month="May",
day="10",
volume="13",
pages="e53255",
keywords="systematic review",
keywords="family",
keywords="patient participation",
keywords="hospital medicine",
keywords="aged",
keywords="geriatrics",
keywords="qualitative research",
abstract="Background: Older adults are frequently hospitalized. Family involvement during these hospitalizations is incompletely characterized in the literature. Objective: This study aimed to better understand how families are involved in the care of hospitalized older adults and develop a conceptual model describing the phenomenon of family involvement in the care of hospitalized older adults. Methods: We describe the protocol of a qualitative evidence synthesis (QES), a systematic review of qualitative studies. We chose to focus on qualitative studies given the complexity and multifaceted nature of family involvement in care, a type of topic best understood through qualitative inquiry. The protocol describes our process of developing a research question and eligibility criteria for inclusion in our QES based on the SPIDER (Sample, Phenomenon of Interest, Design, Evaluation, and Research type) tool. It describes the development of our search strategy, which was used to search MEDLINE (via Ovid), Embase (via Elsevier), PsycINFO (via Ovid), and CINAHL Complete (via EBSCO). Title and abstract screening and full-text screening will occur sequentially. Purposive sampling may be used depending on the volume of studies identified as eligible for inclusion during our screening process. Descriptive data regarding included individual studies will be extracted and summarized in tables. The results from included studies will be synthesized using qualitative methods and used to develop a conceptual model. The conceptual model will be presented to community members via engagement panels for further refinement. Results: As of September 2023, we have assembled a multidisciplinary team including physicians, nurses, health services researchers, a librarian, a social worker, and a health economist. We have finalized our search strategy and executed the search, yielding 8862 total citations. We are currently screening titles and abstracts and anticipate that full-text screening, data extraction, quality appraisal, and synthesis will be completed by summer of 2024. Conceptual model development will then take place with community engagement panels. We anticipate submitting our manuscript for publication in the fall of 2024. Conclusions: This paper describes the protocol for a QES of family involvement in the care of hospitalized older adults. We will use identified themes to create a conceptual model to inform further intervention development and policy change. Trial Registration: PROSPERO 465617; https://www.crd.york.ac.uk/prospero/display\_record.php?ID=CRD42023465617 International Registered Report Identifier (IRRID): PRR1-10.2196/53255 ",
doi="10.2196/53255",
url="https://www.researchprotocols.org/2024/1/e53255",
url="http://www.ncbi.nlm.nih.gov/pubmed/38457771"
}


@Article{info:doi/10.2196/53194,
author="O'Donnell, A. Elizabeth
and Van Citters, D. Aricca
and Khayal, S. Inas
and Wilson, M. Matthew
and Gustafson, David
and Barnato, E. Amber
and Buccellato, C. Andrea
and Young, Colleen
and Holthoff, M. Megan
and Korsunskiy, Eugene
and Tomlin, C. Stephanie
and Cullinan, M. Amelia
and Steinbaugh, C. Alexandra
and Hinson, J. Jennifer
and Johnson, R. Kristen
and Williams, Andrew
and Thomson, M. Ruth
and Haines, M. Janet
and Holmes, B. Anne
and Bradley, D. Ann
and Nelson, C. Eugene
and Kirkland, B. Kathryn",
title="A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study",
journal="JMIR Hum Factors",
year="2024",
month="May",
day="8",
volume="11",
pages="e53194",
keywords="human-centered design",
keywords="caregivers",
keywords="care partners",
keywords="serious illness",
keywords="peer support",
keywords="online support network",
keywords="virtual network",
keywords="online network",
keywords="caregiver",
keywords="unmet need",
keywords="unmet needs",
keywords="active care",
keywords="bereaved care",
keywords="bereavement",
keywords="clinician",
keywords="clinicians",
keywords="function",
keywords="functions",
keywords="specification",
keywords="information",
keywords="emotional support",
keywords="technical support",
keywords="privacy protection",
keywords="rural",
keywords="viability",
keywords="impact",
keywords="engineering design",
keywords="care provider",
keywords="care providers",
keywords="mortality",
keywords="quality of life",
keywords="tertiary care",
keywords="caregiving",
abstract="Background: Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available. Objective: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement. Methods: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network. Results: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period. Conclusions: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network. ",
doi="10.2196/53194",
url="https://humanfactors.jmir.org/2024/1/e53194",
url="http://www.ncbi.nlm.nih.gov/pubmed/38717809"
}


@Article{info:doi/10.2196/50507,
author="Boudreau, Hannah Jacqueline
and Moo, R. Lauren
and Kennedy, A. Meaghan
and Conti, Jennifer
and Anwar, Chitra
and Pimentel, B. Camilla
and Nearing, A. Kathryn
and Hung, W. William
and Dryden, M. Eileen",
title="Needs for Successful Engagement in Telemedicine Among Rural Older US Veterans and Their Caregivers: Qualitative Study",
journal="JMIR Form Res",
year="2024",
month="May",
day="7",
volume="8",
pages="e50507",
keywords="caregivers",
keywords="geriatrics",
keywords="older adults",
keywords="rural veterans",
keywords="rural",
keywords="specialty care",
keywords="telehealth",
keywords="telemedicine",
keywords="veterans",
abstract="Background: Telemedicine is an important option for rural older adults who often must travel far distances to clinics or forgo essential care. In 2014, the Geriatric Research, Education, and Clinical Centers (GRECC) of the US Veterans Health Administration (VA) established a national telemedicine network called GRECC Connect. This network increased access to geriatric specialty care for the 1.4 million rural VA-enrolled veterans aged 65 years or older. The use of telemedicine skyrocketed during the COVID-19 pandemic, which disproportionately impacted older adults, exacerbating disparities in specialty care access as overburdened systems shut down in-person services. This surge presented a unique opportunity to study the supports necessary for those who would forgo telemedicine if in-person care were available. Objective: In spring 2021, we interviewed veterans and their informal caregivers to (1) elicit their experiences attempting to prepare for a video visit with a GRECC Connect geriatric specialist and (2) explore facilitators and barriers to successful engagement in a telemedicine visit. Methods: We conducted a cross-sectional qualitative evaluation with patients and their caregivers who agreed to participate in at least 1 GRECC Connect telemedicine visit in the previous 3 months. A total of 30 participants from 6 geographically diverse GRECC Connect hub sites agreed to participate. Semistructured interviews were conducted through telephone or the VA's videoconference platform for home telemedicine visits (VA Video Connect) per participant preference. We observed challenges and, when needed, provided real-time technical support to facilitate VA Video Connect use for interviews. All interviews were recorded with permission and professionally transcribed. A team of 5 researchers experienced in qualitative research analyzed interview transcripts using rapid qualitative analysis. Results: From 30 participant interviews, we identified the following 4 categories of supports participants described regarding successful engagement in telemedicine, as defined by visit completion, satisfaction, and willingness to engage in telemedicine in the future: (1) caregiver presence to facilitate technology setup and communication; (2) flexibility in visit modality (eg, video from home or a clinic or telephone); (3) technology support (eg, determining device compatibility or providing instruction and on-demand assistance); and (4) assurance of comfort with web-based communication, including orientation to features like closed captioning. Supports were needed at multiple points before the visit, and participants stressed the importance of eliciting the varying needs and preferences of each patient-caregiver dyad. Though many initially agreed to a telemedicine visit because of pandemic-related clinic closures, participants were satisfied with telemedicine and willing to use it for other types of health care visits. Conclusions: To close gaps in telemedicine use among rural older adults, supports must be tailored to individuals, accounting for technology availability and comfort, as well as availability of and need for caregiver involvement. Comprehensive scaffolding of support starts well before the first telemedicine visit. ",
doi="10.2196/50507",
url="https://formative.jmir.org/2024/1/e50507",
url="http://www.ncbi.nlm.nih.gov/pubmed/38713503"
}


@Article{info:doi/10.2196/53019,
author="Aguirre, Alyssa
and Hilsabeck, Robin
and Smith, Tawny
and Xie, Bo
and He, Daqing
and Wang, Zhendong
and Zou, Ning",
title="Assessing the Quality of ChatGPT Responses to Dementia Caregivers' Questions: Qualitative Analysis",
journal="JMIR Aging",
year="2024",
month="May",
day="6",
volume="7",
pages="e53019",
keywords="Alzheimer's disease",
keywords="information technology",
keywords="social media",
keywords="neurology",
keywords="dementia",
keywords="Alzheimer disease",
keywords="caregiver",
keywords="ChatGPT",
abstract="Background: Artificial intelligence (AI) such as ChatGPT by OpenAI holds great promise to improve the quality of life of patients with dementia and their caregivers by providing high-quality responses to their questions about typical dementia behaviors. So far, however, evidence on the quality of such ChatGPT responses is limited. A few recent publications have investigated the quality of ChatGPT responses in other health conditions. Our study is the first to assess ChatGPT using real-world questions asked by dementia caregivers themselves. Objectives: This pilot study examines the potential of ChatGPT-3.5 to provide high-quality information that may enhance dementia care and patient-caregiver education. Methods: Our interprofessional team used a formal rating scale (scoring range: 0-5; the higher the score, the better the quality) to evaluate ChatGPT responses to real-world questions posed by dementia caregivers. We selected 60 posts by dementia caregivers from Reddit, a popular social media platform. These posts were verified by 3 interdisciplinary dementia clinicians as representing dementia caregivers' desire for information in the areas of memory loss and confusion, aggression, and driving. Word count for posts in the memory loss and confusion category ranged from 71 to 531 (mean 218; median 188), aggression posts ranged from 58 to 602 words (mean 254; median 200), and driving posts ranged from 93 to 550 words (mean 272; median 276). Results: ChatGPT's response quality scores ranged from 3 to 5. Of the 60 responses, 26 (43\%) received 5 points, 21 (35\%) received 4 points, and 13 (22\%) received 3 points, suggesting high quality. ChatGPT obtained consistently high scores in synthesizing information to provide follow-up recommendations (n=58, 96\%), with the lowest scores in the area of comprehensiveness (n=38, 63\%). Conclusions: ChatGPT provided high-quality responses to complex questions posted by dementia caregivers, but it did have limitations. ChatGPT was unable to anticipate future problems that a human professional might recognize and address in a clinical encounter. At other times, ChatGPT recommended a strategy that the caregiver had already explicitly tried. This pilot study indicates the potential of AI to provide high-quality information to enhance dementia care and patient-caregiver education in tandem with information provided by licensed health care professionals. Evaluating the quality of responses is necessary to ensure that caregivers can make informed decisions. ChatGPT has the potential to transform health care practice by shaping how caregivers receive health information. ",
doi="10.2196/53019",
url="https://aging.jmir.org/2024/1/e53019"
}


@Article{info:doi/10.2196/50759,
author="Lee, Shinduk
and Ory, G. Marcia
and Vollmer Dahlke, Deborah
and Smith, Lee Matthew",
title="Technology Use Among Older Adults and Their Caregivers: Cross-Sectional Survey Study",
journal="JMIR Aging",
year="2024",
month="May",
day="1",
volume="7",
pages="e50759",
keywords="technology",
keywords="caregiving",
keywords="social determinants of health",
keywords="health disparities",
keywords="disparity",
keywords="disparities",
keywords="caregiver",
keywords="caregivers",
keywords="carers",
keywords="technology use",
keywords="usage",
keywords="gerontology",
keywords="geriatric",
keywords="geriatrics",
keywords="older adult",
keywords="older adults",
keywords="elder",
keywords="elderly",
keywords="older person",
keywords="older people",
keywords="ageing",
keywords="aging",
keywords="cross-sectional",
keywords="survey",
keywords="surveys",
keywords="computer use",
keywords="device",
keywords="devices",
keywords="adoption",
keywords="dyad",
keywords="dyads",
abstract="Background: Informal caregivers are called upon to provide substantial care, but more needs to be known about technology use among older adult and caregiver dyads. Objective: This study described technology use among older adults and their caregivers, explored potential correlates of technology use, and highlighted implications for practice. Methods: A cross-sectional survey was conducted among unpaid caregivers of older adults (n=486). Primary outcomes were self-reported technology (devices and functions) use among caregivers and their oldest care recipient. The concordance of technology use among caregivers and care recipients was also examined. Multivariable regression models were conducted separately for caregivers and care recipients. Results: Greater proportions of caregivers used all examined technologies, except for the medication alerts or tracking function, than care recipients. Caregivers used an average of 3.4 devices and 4.2 functions, compared to 1.8 devices and 1.6 functions used by their care recipients. Among caregivers, younger age, higher income, and higher education were associated with more technology use (P<.05). Among care recipients, younger age, not having cognitive dysfunction, and caregiver's technology use were associated with more technology use (P<.05). Conclusions: Understanding technology use patterns and device adoption across diverse caregiver and care recipient populations is increasingly important for enhancing geriatric care. Findings can guide recommendations about appropriate technology interventions and help providers communicate and share information more effectively with patients and their caregivers. ",
doi="10.2196/50759",
url="https://aging.jmir.org/2024/1/e50759"
}


@Article{info:doi/10.2196/54913,
author="Soares, Suzete
and Hoffmeister, Viecili Lou{\'i}se
and Fernandes, F{\'a}tima Maria de
and Henriques, Adriana
and Costa, Andreia",
title="The Use of Digital Technologies in the Promotion of Health Literacy and Empowerment of Informal Caregivers: Scoping Review",
journal="JMIR Aging",
year="2024",
month="Apr",
day="29",
volume="7",
pages="e54913",
keywords="health literacy",
keywords="empowerment",
keywords="digital technology",
keywords="informal caregiver",
keywords="family caregiver",
abstract="Background: Informal caregivers (IC) play an important role in the community as health care providers for people who are dependent on self-care. Health literacy contributes to empowerment, better care, and self-management of one's own health and can be developed using digital technologies. Objective: This study aims to map scientific evidence about the use of digital technologies to promote health literacy and the empowerment of ICs. Methods: We conducted a scoping review following the Joanna Briggs Institute methodology. The CINAHL, MEDLINE, Scopus, and PubMed databases were searched to find primary studies on the theme. Inclusion criteria were based on the Population, Concept, and Context logic. To be selected for analysis, studies must have involved informal or family caregivers aged ?18 years who provide care to dependent persons and who have access to the internet and digital devices (computer, smartphone, and tablet). A total of 2 independent researchers (SS and LVH) performed the screening process. This study is part of a main project that was approved by the Ethics Committee for Health of the Regional Health Administration of Lisbon and Tagus Valley (reference 058/CES/INV/2022). Results: A total of 9 studies were included in the review. The analysis of the studies showed that ICs use digital tools, such as computers and smartphones, with smartphones being the preferred tool. ICs use the internet to access information; manage home tasks; communicate with relatives, their peers, and health care professionals; and take part in forums. Due to difficulties in leaving their houses, forums are highly valued to preserve human connections. Conclusions: The use of digital technologies to convey clear, objective, reliable, and accessible information is a strategic action for promoting health literacy and for contemplating the variable care needs of ICs. By working with ICs in the development of new technologies, researchers are building a new tool that meets ICs' needs. ",
doi="10.2196/54913",
url="https://aging.jmir.org/2024/1/e54913",
url="http://www.ncbi.nlm.nih.gov/pubmed/38683655"
}


@Article{info:doi/10.2196/50234,
author="Kwok, Ian
and Lattie, Gardiner Emily
and Yang, Dershung
and Summers, Amanda
and Cotten, Paul
and Leong, Alina Caroline
and Moskowitz, Tedlie Judith",
title="Developing Social Enhancements for a Web-Based, Positive Emotion Intervention for Alzheimer Disease Caregivers: Qualitative Focus Group and Interview Study",
journal="JMIR Form Res",
year="2024",
month="Apr",
day="25",
volume="8",
pages="e50234",
keywords="Alzheimer disease",
keywords="dementia",
keywords="caregiving",
keywords="eHealth",
keywords="web-based interventions",
keywords="positive emotion",
keywords="stress",
keywords="coping",
abstract="Background: Alzheimer disease is a degenerative neurological condition that requires long-term care. The cost of these responsibilities is often borne by informal caregivers, who experience an elevated risk of negative physical and psychological outcomes. Previously, we designed a positive emotion regulation intervention that was shown to improve well-being among dementia caregivers when delivered through one-on-one videoconferencing lessons with a trained facilitator. However, the format required significant resources in terms of logistics and facilitator time. To broaden the reach of the intervention, we aimed to develop the Social Augmentation of Self-Guided Electronic Delivery of the Life Enhancing Activities for Family Caregivers (SAGE LEAF) program, an iteration of the intervention in a self-guided, web-based format with enhanced opportunities for social connection. Objective: The aim of this study was to gather feedback to inform the design of social features for the SAGE LEAF intervention. In the absence of a facilitator, our goal with the self-guided SAGE LEAF intervention was to integrate various social features (eg, discussion board, automated support, and profiles) to maximize engagement among participants. Methods: Qualitative data were collected from 26 individuals through (1) interviews with participants who completed a previous version of the intervention via videoconferencing with a facilitator, (2) focus groups with dementia caregivers who had not previously experienced the intervention, and (3) focus groups with Alzheimer disease clinical care providers. We conducted a qualitative thematic analysis to identify which social features would be the most helpful and how they could be implemented in a way that would be best received by caregivers. Results: Interview and focus group feedback indicated that participants generally liked the potential features suggested, including the discussion boards, multimedia content, and informational support. They had valuable suggestions for optimal implementation. For example, participants liked the idea of a buddy system where they would be matched up with another caregiver for the duration of the study. However, they expressed concern about differing expectations among caregivers and the possibility of matched caregivers not getting along. Participants also expressed interest in giving caregivers access to a podcast on the skills, which would allow them to review additional content when they wished. Conclusions: Taken together, the discussions with caregivers and providers offered unique insights into the types of social features that may be integrated into the SAGE LEAF intervention, as well as implementation suggestions to improve the acceptability of the features among caregivers. These insights will allow us to design social features for the intervention that are optimally engaging and helpful for caregivers. ",
doi="10.2196/50234",
url="https://formative.jmir.org/2024/1/e50234",
url="http://www.ncbi.nlm.nih.gov/pubmed/38662432"
}


@Article{info:doi/10.2196/50032,
author="Kim, J. Jacqueline H.
and Kagawa Singer, Marjorie
and Bang, Lisa
and Ko, Amy
and Nguyen, Becky
and Chen Stokes, Sandy
and Lu, Qian
and Stanton, L. Annette",
title="Supportive Care Needs in Chinese, Vietnamese, and Korean Americans With Metastatic Cancer: Mixed Methods Protocol for the DAWN Study",
journal="JMIR Res Protoc",
year="2024",
month="Apr",
day="22",
volume="13",
pages="e50032",
keywords="Asian American",
keywords="disparities",
keywords="metastatic cancer",
keywords="psychosocial",
keywords="supportive care",
keywords="unmet needs",
keywords="well-being",
abstract="Background: Asian Americans with metastatic cancer are an understudied population. The Describing Asian American Well-Being and Needs in Cancer (DAWN) Study was designed to understand the supportive care needs of Chinese-, Vietnamese-, and Korean-descent (CVK) patients with metastatic cancer. Objective: This study aims to present the DAWN Study protocol involving a primarily qualitative, convergent, mixed methods study from multiple perspectives (patients or survivors, caregivers, and health care professionals). Methods: CVK Americans diagnosed with solid-tumor metastatic cancer and their caregivers were recruited nationwide through various means (registries, community outreach newsletters, newspapers, radio advertisements, etc). Potentially eligible individuals were screened and consented on the web or through a phone interview. The study survey and interview for patients or survivors and caregivers were provided in English, traditional/simplified Chinese and Cantonese/Mandarin, Vietnamese, and Korean, and examined factors related to facing metastatic cancer, including quality of life, cultural values, coping, and cancer-related symptoms. Community-based organizations assisted in recruiting participants, developing and translating study materials, and connecting the team to individuals for conducting interviews in Asian languages. Health care professionals who have experience working with CVK patients or survivors with metastatic solid cancer were recruited through referrals from the DAWN Study community advisory board and were interviewed to understand unmet supportive care needs. Results: Recruitment began in November 2020; data collection was completed in October 2022. A total of 66 patients or survivors, 13 caregivers, and 15 health care professionals completed all portions of the study. We completed data management in December 2023 and will submit results for patients or survivors and caregivers to publication outlets in 2024. Conclusions: Future findings related to this protocol will describe and understand the supportive care needs of CVK patients or survivors with metastatic cancer and will help develop culturally appropriate psychosocial interventions that target known predictors of unmet supportive care needs in Chinese, Vietnamese, and Korean Americans with metastatic cancer. International Registered Report Identifier (IRRID): DERR1-10.2196/50032 ",
doi="10.2196/50032",
url="https://www.researchprotocols.org/2024/1/e50032",
url="http://www.ncbi.nlm.nih.gov/pubmed/38648633"
}


@Article{info:doi/10.2196/56346,
author="Jabin, Rahman Md Shafiqur
and Samuriwo, Ray
and Chilaka, Marcus
and Yaroson, Vann Emilia",
title="Effectiveness and Experiences of Quality Improvement Interventions in Older Adult Care: Protocol for a Mixed Methods Systematic Review",
journal="JMIR Res Protoc",
year="2024",
month="Apr",
day="18",
volume="13",
pages="e56346",
keywords="patient safety",
keywords="acceptability",
keywords="accessibility",
keywords="appropriateness",
keywords="timeliness",
keywords="equitability",
keywords="social care",
abstract="Background: Quality improvement (QI) interventions are designed to resolve the recurring challenges of care for older individuals, such as working conditions for staff, roles of older individuals in their own care and their families, and relevant stakeholders. Therefore, there is a need to map the impacts of QI interventions in older adult care settings and further improve health and social care systems associated with older adults. Objective: This review aims to compile and synthesize the best available evidence regarding the effectiveness of policy and practice QI interventions in older adult care. The secondary aim is to understand the care of older individuals and QI intervention-related experiences and perspectives of stakeholders, care providers, older individuals, and their families. Methods: The mixed methods review will follow the standard methodology used by Joanna Briggs Institute. The published studies will be searched through CINAHL, MEDLINE, PsycINFO, ASSIA, and Web of Science, and the unpublished studies through Mednar, Trove, OCLC WorldCat, and Dissertations and Theses. This review included both qualitative and quantitative analyses of patients undergoing older adult care and any health and care professionals involved in the care delivery for older adults; a broad range of QI interventions, including assistive technologies, effects of training and education, improved reporting, safety programs, and medical devices; the experiences and perspectives of staff and patients; the context of older adult care setting; and a broad range of outcomes, including patient safety. The standard procedure for reporting, that is, PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, will be followed. Results: A result-based convergent synthesis design will be used in which both quantitative and qualitative studies will be analyzed separately, and the results of both syntheses will be then integrated during a final (convergent) synthesis. The integration will compare the findings of quantitative and qualitative evidence using tables in light of the results of both syntheses. Conclusions: This comprehensive review is expected to reflect on the insights into some QI interventions and their impact, outline some common challenges of quality for older adult care, and benefit both the practical usefulness of care service activities and the society at large. International Registered Report Identifier (IRRID): PRR1-10.2196/56346 ",
doi="10.2196/56346",
url="https://www.researchprotocols.org/2024/1/e56346",
url="http://www.ncbi.nlm.nih.gov/pubmed/38635311"
}


@Article{info:doi/10.2196/55192,
author="Kvalsvik, Fifi
and Larsen, Hamre Bente
and Eilertsen, Grethe
and Falkenberg, K. Helle
and Dalen, Ingvild
and Haaland, Stine
and Storm, Marianne",
title="Health Needs Assessment in Home-Living Older Adults: Protocol for a Pre-Post Study",
journal="JMIR Res Protoc",
year="2024",
month="Apr",
day="18",
volume="13",
pages="e55192",
keywords="assessment",
keywords="frailty",
keywords="healthy aging",
keywords="health care",
keywords="home-living older adults",
keywords="pre-post study",
keywords="protocol",
abstract="Background: Conducting a health needs assessment for older adults is important, particularly for early detection and management of frailty. Such assessments can help to improve health outcomes, maintain overall well-being, and support older adults in retaining their independence as they age at home. Objective: In this study, a systematic approach to health needs assessment is adopted in order to reflect real-world practices in municipal health care and capture the nuances of frailty. The aim is to assess changes in frailty levels in home-living older adults over 5 months and to examine the observable functional changes from a prestudy baseline (t1) to a poststudy period (t2). Additionally, the study explores the feasibility of conducting the health needs assessment from the perspective of home-living older adults and their informal caregivers. Methods: Interprofessional teams of registered nurses, physiotherapists, and occupational therapists will conduct 2 health needs assessments covering physical, cognitive, psychological, social, and behavioral domains. The study includes 40 home-living older adults of 75 years of age or older, who have applied for municipal health and care services in Norway. A quantitative approach will be applied to assess changes in frailty levels in home-living older adults over 5 months. In addition, we will examine the observable functional changes from t1 to t2 and how these changes correlate to frailty levels. Following this, a qualitative approach will be used to examine the perspectives of participants and their informal caregivers regarding the health needs assessment and its feasibility. The final sample size for the qualitative phase will be determined based on the participant's willingness to be interviewed. The quantitative data consist of descriptive statistics, simple tests, and present plots and correlation coefficients. For the qualitative analysis, we will apply thematic analysis. Results: The initial baseline assessments were completed in July 2023, and the second health needs assessments are ongoing. We expect the results to be available for analysis in the spring of 2024. Conclusions: This study has potential benefits for not only older adults and their informal caregivers but also health care professionals. Moreover, it can be used to inform future studies focused on health needs assessments of this specific demographic group. The study also provides meaningful insights for local policy makers, with potential future implications at the national level. Trial Registration: ClinicalTrials.gov NCT05837728; https://clinicaltrials.gov/study/NCT05837728 International Registered Report Identifier (IRRID): DERR1-10.2196/55192 ",
doi="10.2196/55192",
url="https://www.researchprotocols.org/2024/1/e55192",
url="http://www.ncbi.nlm.nih.gov/pubmed/38635319"
}


@Article{info:doi/10.2196/55132,
author="Fan, Qiping
and Hoang, Minh-Nguyet
and DuBose, Logan
and Ory, G. Marcia
and Vennatt, Jeswin
and Salha, Diana
and Lee, Shinduk
and Falohun, Tokunbo",
title="The Olera.care Digital Caregiving Assistance Platform for Dementia Caregivers: Preliminary Evaluation Study",
journal="JMIR Aging",
year="2024",
month="Apr",
day="17",
volume="7",
pages="e55132",
keywords="evaluation",
keywords="usability",
keywords="family caregiver",
keywords="Alzheimer disease",
keywords="dementia",
keywords="digital health",
keywords="mobile phone",
abstract="Background: The increasing prevalence of Alzheimer disease and Alzheimer disease--related dementia in the United States has amplified the health care burden and caregiving challenges, especially for caregivers of people living with dementia. A web-based care planning tool, Olera.care, was developed to aid caregivers in managing common challenges associated with dementia care. Objective: This study aims to preliminarily evaluate the quality and usability of the Olera.care platform and assess the preferences of using the technology and interests in learning about different older adult care services among caregivers. Methods: For interview 1, we aim to understand caregiving needs and let the participants start engaging with the platform. After they engage with the platform, we schedule the second interview and let the participants complete the Mobile Application Rating Scale. The survey also included sociodemographic characteristics, caregiving experiences, communication preferences in technology adoption, and older adult care service use and interests. Descriptive statistics were used to describe the quality and usability of the platform and characteristics of the participants. We conducted 2-sample 2-tailed t tests to examine the differences in the Mobile Application Rating Scale evaluation scores by caregiver characteristics. Results: Overall, 30 adult caregivers in Texas completed the evaluation. The majority were aged ?50 years (25/30, 83\%), women (23/30, 77\%), White (25/30, 83\%), and financially stable (20/30, 67\%). The Olera.care platform evaluation showed high satisfaction, with an overall mean rating of 4.57 (SD 0.57) of 5, and scored well in engagement (mean 4.10, SD 0.61), functionality (mean 4.46, SD 0.44), aesthetics (mean 4.58, SD 0.53), and information quality (mean 4.76, SD 0.44) consistently across all participants. A statistically significant difference (P=.02) was observed in functionality evaluation scores by duration of caregiving, with caregivers dedicating more hours to care rating it higher than those providing less care (mean 4.6, SD 0.4 vs mean 4.2, SD 0.5). In addition, caregivers with less caregiving experience reported significantly higher evaluation scores for aesthetics (P=.04) and information quality (P=.03) compared to those with longer years of caregiving. All participants expressed a willingness to recommend the app to others, and 90\% (27/30) rated the app overall positively. Most of the participants (21/30, 70\%) favored anonymous interactions before receiving personalized feedback and preferred computer browsers over mobile apps. Medical home health services were the most used, with a diverse range of services being used. Caregiver support groups, medical providers, memory care, meal services, and adult day care were among the most desired services for future exploration. Conclusions: The Olera.care web-based platform is a practical, engaging, easy-to-use, visually appealing, and informative tool for dementia caregivers. Future development and research are essential to enhance the platform and comprehensively evaluate it among a broader population. ",
doi="10.2196/55132",
url="https://aging.jmir.org/2024/1/e55132",
url="http://www.ncbi.nlm.nih.gov/pubmed/38630527"
}


@Article{info:doi/10.2196/50118,
author="Laidsaar-Powell, Rebekah
and Giunta, Sarah
and Butow, Phyllis
and Keast, Rachael
and Koczwara, Bogda
and Kay, Judy
and Jefford, Michael
and Turner, Sandra
and Saunders, Christobel
and Schofield, Penelope
and Boyle, Frances
and Yates, Patsy
and White, Kate
and Miller, Annie
and Butt, Zoe
and Bonnaudet, Melanie
and Juraskova, Ilona",
title="Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers",
journal="JMIR Med Educ",
year="2024",
month="Apr",
day="17",
volume="10",
pages="e50118",
keywords="family carers",
keywords="patient education",
keywords="health professional education",
keywords="web-based intervention",
keywords="mobile phone",
abstract="Background: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill?equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers. Objective: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO?pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting. Methods: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including ``think-aloud'' interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3). Results: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small ``snackable'' sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. Conclusions: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care. ",
doi="10.2196/50118",
url="https://mededu.jmir.org/2024/1/e50118",
url="http://www.ncbi.nlm.nih.gov/pubmed/38630531"
}


@Article{info:doi/10.2196/53078,
author="Castro, Aimee
and Lalonde-LeBlond, Gabrielle
and Freitas, Zelda
and Arnaert, Antonia
and Bitzas, Vasiliki
and Kildea, John
and Moffatt, Karyn
and Phillips, Devon
and Wiseblatt, Lorne
and Hall, Audrey-Jane
and Despr{\'e}s, V{\'e}ronique
and Tsimicalis, Argerie",
title="In-Home Respite Care Services Available to Families With Palliative Care Needs in Quebec: Novel Digital Environmental Scan",
journal="JMIR Nursing",
year="2024",
month="Apr",
day="16",
volume="7",
pages="e53078",
keywords="respite care",
keywords="palliative care",
keywords="caregiving",
keywords="environmental scan",
keywords="digital methodology",
keywords="accessibility",
abstract="Background: Caregiving dyads in palliative care are confronted with complex care needs. Respite care services can be highly beneficial in alleviating the caregiving burden, supporting survivorship and dying at home. Yet, respite care services are difficult to locate and access in the province of Quebec, Canada, particularly when navigating ubiquitous sources of online health information of varying quality. Objective: This project aimed to (1) compile a list of at-home palliative respite care services in Quebec, Canada; (2) describe key accessibility features for each respite care service; (3) identify accessibility gaps and opportunities; and (4) describe a novel method for conducting environmental scans using internet search engines, internet-based community health databases, and member checking. Methods: A novel environmental scan methodology using 2 internet-based targeted databases and 1 internet search engine was conducted. Results were screened and data were extracted, descriptively analyzed, and geographically schematized. Results: A total of 401 services were screened, and 52 at-home respite care services specific to palliative populations were identified, compiled, and analyzed. These respite care services were characterized by various types of assistance, providers, fees, and serviced geographical regions. Accessibility was explored through the lens of service amenability, availability, eligibility, and compatibility. The data revealed important barriers to accessing respite care services, such as a lack of readily available information on service characteristics, limited availability, and a time-consuming, technical search process for potential respite care users and clinicians to identify appropriate services. Conclusions: Both methodological and contextual knowledge have been gained through this environmental scan. Few methodologies for conducting internet-based environmental scans have been clearly articulated, so we applied several learnings from other scans and devised a methodology for conducting an environmental scan using the mixed methods of internet search engines, internet-based community health databases, and member checking. We have carefully reported our methods, so that others conducting community health environmental scans may replicate our process. Furthermore, through this scan, we identified assorted respite care services and pinpointed needs in the provision of these services. The findings highlighted that more easily accessible and centralized information about respite care services is needed in Quebec. The data will enable the creation of a user-friendly tool to share with community support services across Quebec and ultimately help alleviate the added burden caregivers and clinicians face when looking for respite care services in fragmented and complex digital spaces. ",
doi="10.2196/53078",
url="https://nursing.jmir.org/2024/1/e53078",
url="http://www.ncbi.nlm.nih.gov/pubmed/38625735"
}


@Article{info:doi/10.2196/52443,
author="Otaka, Eri
and Osawa, Aiko
and Kato, Kenji
and Obayashi, Yota
and Uehara, Shintaro
and Kamiya, Masaki
and Mizuno, Katsuhiro
and Hashide, Shusei
and Kondo, Izumi",
title="Positive Emotional Responses to Socially Assistive Robots in People With Dementia: Pilot Study",
journal="JMIR Aging",
year="2024",
month="Apr",
day="11",
volume="7",
pages="e52443",
keywords="dementia care",
keywords="robotics",
keywords="emotion",
keywords="facial expression",
keywords="expression intensity",
keywords="long-term care",
keywords="sensory modality",
keywords="gerontology",
keywords="gerontechnology",
abstract="Background: Interventions and care that can evoke positive emotions and reduce apathy or agitation are important for people with dementia. In recent years, socially assistive robots used for better dementia care have been found to be feasible. However, the immediate responses of people with dementia when they are given multiple sensory modalities from socially assistive robots have not yet been sufficiently elucidated. Objective: This study aimed to quantitatively examine the immediate emotional responses of people with dementia to stimuli presented by socially assistive robots using facial expression analysis in order to determine whether they elicited positive emotions. Methods: This pilot study adopted a single-arm interventional design. Socially assistive robots were presented to nursing home residents in a three-step procedure: (1) the robot was placed in front of participants (visual stimulus), (2) the robot was manipulated to produce sound (visual and auditory stimuli), and (3) participants held the robot in their hands (visual, auditory, and tactile stimuli). Expression intensity values for ``happy,'' ``sad,'' ``angry,'' ``surprised,'' ``scared,'' and ``disgusted'' were calculated continuously using facial expression analysis with FaceReader. Additionally, self-reported feelings were assessed using a 5-point Likert scale. In addition to the comparison between the subjective and objective emotional assessments, expression intensity values were compared across the aforementioned 3 stimuli patterns within each session. Finally, the expression intensity value for ``happy'' was compared between the different types of robots. Results: A total of 29 participants (mean age 88.7, SD 6.2 years; n=27 female; Japanese version of Mini-Mental State Examination mean score 18.2, SD 5.1) were recruited. The expression intensity value for ``happy'' was the largest in both the subjective and objective assessments and increased significantly when all sensory modalities (visual, auditory, and tactile) were presented (median expression intensity 0.21, IQR 0.09-0.35) compared to the other 2 patterns (visual alone: median expression intensity 0.10, IQR 0.03-0.22; P<.001; visual and auditory: median expression intensity 0.10, IQR 0.04-0.23; P<.001). The comparison of different types of robots revealed a significant increase when all stimuli were presented by doll-type and animal-type robots, but not humanoid-type robots. Conclusions: By quantifying the emotional responses of people with dementia, this study highlighted that socially assistive robots may be more effective in eliciting positive emotions when multiple sensory stimuli, including tactile stimuli, are involved. More studies, including randomized controlled trials, are required to further explore the effectiveness of using socially assistive robots in dementia care. Trial Registration: UMIN Clinical Trials Registry UMIN000046256; https://tinyurl.com/yw37auan ",
doi="10.2196/52443",
url="https://aging.jmir.org/2024/1/e52443"
}


@Article{info:doi/10.2196/53489,
author="Atefi, L. Golnaz
and van Knippenberg, M. Rosalia J.
and Bartels, Laureen Sara
and Losada-Baltar, Andr{\'e}s
and M{\'a}rquez-Gonz{\'a}lez, Mar{\'i}a
and Verhey, J. Frans R.
and de Vugt, E. Marjolein",
title="A Web-Based Intervention Based on Acceptance and Commitment Therapy for Family Caregivers of People With Dementia: Mixed Methods Feasibility Study",
journal="JMIR Aging",
year="2024",
month="Apr",
day="4",
volume="7",
pages="e53489",
keywords="acceptance and commitment therapy",
keywords="ACT",
keywords="psychological flexibility",
keywords="behavior change",
keywords="theory-guided eHealth",
keywords="web-based intervention",
keywords="supported self-help",
keywords="family caregivers",
keywords="dementia",
abstract="Background: Acceptance and commitment therapy (ACT), as an empirically based third-wave cognitive behavioral therapy, has shown promise in enhancing well-being and functioning across diverse populations. However, in the context of caregiving, the effect size of available ACT interventions remains at best moderate, sometimes accompanied by high dropout rates, highlighting the need for more effective and feasible intervention designs. Objective: The objective of our study was to evaluate the feasibility and acceptability of a fully online ACT program designed for family caregivers of people with dementia. This study aimed to boost psychological flexibility and support caregivers, enabling them to realize and prioritize their own life values alongside their caregiving responsibilities. Methods: A mixed methods feasibility study using an uncontrolled pretest-posttest design was conducted. This intervention included a 9-week web-based self-help program based on ACT incorporating collaborative goal setting and weekly web-based motivational coaching for family caregivers of people with dementia. This study involved 30 informal caregivers recruited through memory clinics and social media platforms in the Netherlands and received approval from the Medical Ethics Committee of the Maastricht University Medical Center+ (NL77389.068.21/metc21-029). Results: A total of 24 caregivers completed the postintervention assessment, indicating a high adherence rate (24/29, 83\%). Caregivers reported positive feedback regarding collaborative goal setting, but some found challenges in implementing new skills due to their own habitual responses or the unpredictable context of dementia caregiving. Personalizing the intervention based on individual value preferences was highlighted as beneficial. Conclusions: Compared to other web-based self-help ACT interventions for family caregivers, this intervention showed a high adherence and sufficient level of feasibility, which underscores the use of personalization in delivering web-based interventions. Moreover, the potential of this ACT-based intervention for family caregivers of people with dementia was demonstrated, suggesting that further research and a larger-scale controlled trial are warranted to validate its effectiveness. International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2022-070499 ",
doi="10.2196/53489",
url="https://aging.jmir.org/2024/1/e53489",
url="http://www.ncbi.nlm.nih.gov/pubmed/38574360"
}


@Article{info:doi/10.2196/54168,
author="McLaren, E. Jaye
and Hoang-Gia, Dat
and Dorisca, Eugenia
and Hartz, Stephanie
and Dang, Stuti
and Moo, Lauren",
title="Development and Evaluation of a Clinician-Vetted Dementia Caregiver Resources Website: Mixed Methods Approach",
journal="JMIR Form Res",
year="2024",
month="Apr",
day="4",
volume="8",
pages="e54168",
keywords="Alzheimer disease",
keywords="caregiver education",
keywords="dementia",
keywords="interdisciplinary",
keywords="older adults",
keywords="virtual resources",
keywords="website development",
abstract="Background: About 11 million Americans are caregivers for the 6.7 million Americans currently living with dementia. They provide over 18 billion hours of unpaid care per year, yet most have no formal dementia education or support. It is extremely difficult for clinicians to keep up with the demand for caregiver education, especially as dementia is neurodegenerative in nature, requiring different information at different stages of the disease process. In this digital age, caregivers often seek dementia information on the internet, but clinicians lack a single, reliable compendium of expert-approved digital resources to provide to dementia caregivers. Objective: Our aim was to create a dementia caregiver resources website to serve as a hub for user-friendly, high-quality, and expert-reviewed dementia educational resources that clinicians can easily supply to family caregivers of people with dementia. Methods: An interdisciplinary website development team (representing dementia experts from occupational therapy, nursing, social work, geriatrics, and neurology) went through 6 iterative steps of website development to ensure resource selection quality and eligibility rigor. Steps included (1) resource collection, (2) creation of eligibility criteria, (3) resource organization by topic, (4) additional content identification, (5) finalize resource selection, and (6) website testing and launch. Website visits were tracked, and a 20-item survey about website usability and utility was sent to Veterans Affairs tele-geriatrics interdisciplinary specialty care groups. Results: Following website development, the dementia caregiver resource website was launched in February 2022. Over the first 9 months, the site averaged 1100 visits per month. The 3 subcategories with the highest number of visits were ``general dementia information,'' ``activities of daily living,'' and ``self-care and support.'' Most (44/45, 98\%) respondents agreed or strongly agreed that the website was easy to navigate, and all respondents agreed or strongly agreed that the resources were useful. Conclusions: The iterative process of creating the dementia caregiver resources website included continuous identification, categorization, and prioritization of resources, followed by clinician feedback on website usability, accessibility, and suggestions for improvement. The website received thousands of visits and positive clinician reviews in its first 9 months. Results demonstrate that an expert-vetted, nationally, and remotely available resource website allows for easy access to dementia education for clinicians to provide for their patients and caregivers. This process of website development can serve as a model for other clinical subspecialty groups seeking to create a comprehensive educational resource for populations who lack easy access to specialty care. ",
doi="10.2196/54168",
url="https://formative.jmir.org/2024/1/e54168",
url="http://www.ncbi.nlm.nih.gov/pubmed/38573761"
}


@Article{info:doi/10.2196/51720,
author="Ntiamoah, Mabel
and Xavier, Teenu
and Lambert, Joshua",
title="Sentiment Analysis of Patient- and Family-Related Sepsis Events: Exploratory Study",
journal="JMIR Nursing",
year="2024",
month="Apr",
day="1",
volume="7",
pages="e51720",
keywords="families",
keywords="patients",
keywords="sentiment analysis",
keywords="sepsis",
abstract="Background: Despite the life-threatening nature of sepsis, little is known about the emotional experiences of patients and their families during sepsis events. We conducted a sentiment analysis pertaining to sepsis incidents involving patients and families, leveraging textual data retrieved from a publicly available blog post disseminated by the Centers for Disease Control and Prevention (CDC). Objective: This investigation involved a sentiment analysis of patient- and family-related sepsis events, leveraging text responses sourced from a publicly accessible blog post disseminated by the CDC. Driven by the imperative to elucidate the emotional dynamics encountered by patients and their families throughout sepsis incidents, the overarching aims centered on elucidating the emotional ramifications of sepsis on both patients and their families and discerning potential avenues for enhancing the quality of sepsis care. Methods: The research used a cross-sectional data mining methodology to investigate the sentiments and emotional aspects linked to sepsis, using a data set sourced from the CDC, which encompasses 170 responses from both patients and caregivers, spanning the period between September 2014 and September 2020. This investigation used the National Research Council Canada Emotion Lexicon for sentiment analysis, coupled with a combination of manual and automated techniques to extract salient features from textual responses. The study used negative binomial least absolute shrinkage and selection operator regressions to ascertain significant textual features that correlated with specific emotional states. Moreover, the visualization of Plutchik's Wheel of Emotions facilitated the discernment of prevailing emotions within the data set. Results: The results showed that patients and their families experienced a range of emotions during sepsis events, including fear, anxiety, sadness, and gratitude. Our analyses revealed an estimated incidence rate ratio (IRR) of 1.35 for fear-related words and a 1.51 IRR for sadness-related words when mentioning ``hospital'' in sepsis-related experiences. Similarly, mentions of ``intensive care unit'' were associated with an average occurrence of 12.3 fear-related words and 10.8 sadness-related words. Surviving patients' experiences had an estimated 1.15 IRR for joy-related words, contrasting with discussions around organ failure, which were associated with multiple negative emotions including disgust, anger, fear, and sadness. Furthermore, mentions of ``death'' were linked to more fear and anger words but fewer joy-related words. Conversely, longer timelines in sepsis events were associated with more joy-related words and fewer fear-related words, potentially indicating improved emotional adaptation over time. Conclusions: The study's outcomes underscore the imperative for health care providers to integrate emotional support alongside medical interventions for patients and families affected by sepsis, emphasizing the emotional toll incurred and highlighting the necessity of acknowledgment and resolution, advocating for the use of sentiment analysis as a means to tailor personalized emotional aid, and thereby potentially augmenting both patient and family welfare and overall outcomes. ",
doi="10.2196/51720",
url="https://nursing.jmir.org/2024/1/e51720",
url="http://www.ncbi.nlm.nih.gov/pubmed/38557694"
}


@Article{info:doi/10.2196/53402,
author="Sharma, Nikita
and Grotenhuijs, Karen
and Gemert-Pijnen, van J. E. W. C.
and Oinas-Kukkonen, Harri
and Braakman-Jansen, A. L. M.",
title="Low-Fidelity Prototype of a Sensor-Dependent Interaction Platform: Formative Evaluation With Informal Caregivers of Older Adults With Cognitive Impairment",
journal="JMIR Form Res",
year="2024",
month="Mar",
day="22",
volume="8",
pages="e53402",
keywords="older adult care",
keywords="informal caregivers",
keywords="cognitive impairment",
keywords="sensing solutions",
keywords="information communication platform",
keywords="low-fidelity",
keywords="lo-fi prototype",
abstract="Background: Unobtrusive sensing technologies developed for monitoring deviant behaviors in older adult care require integration with an interaction platform to facilitate the flow of information between older adults and their caregivers. However, the continuous monitoring capabilities generate a considerable amount of data that must be interpreted, filtered, and personalized before being communicated to the informal caregivers based on their specific care needs and requirements. Objective: For the effective implementation of unobtrusive sensing solutions (USSs) in the care of older adults with cognitive impairment, we aimed to explore the expectations and preconditions regarding the implementation of USSs from the perspective of informal caregivers. Subsequently, we designed and evaluated a low-fidelity prototype of an interaction platform for its conceptual workflow and usability, incorporating persuasive system design features based on the needs and requirements of informal caregivers. Methods: Overall, 6 informal caregivers of older adults with cognitive impairment living alone participated in this qualitative interview study. We explored the expectation and preconditions regarding implementation through open-ended questions and conducted a formative evaluation (usability study with a think-aloud approach) to evaluate the conceptual workflow and used persuasive system design features in the interaction platform. Overall, a combination of inductive and thematic analyses was used to analyze the interviews. Results: The results of this study present both positive and negative outcome expectations regarding the implementation of USSs, highlighting benefits such as objective decision-making and peace of mind and concerns about information overload and the potential substitution of human contact. Strategic information communication agreements between informal and formal caregivers were deemed crucial for the successful implementation of USSs in care. Overall, informal caregivers had a positive experience with the low-fidelity prototype of the interaction platform, particularly valuing the personalization feature. Conclusions: In conclusion, to achieve successful implementation, a holistic design approach is necessary, and equal consideration should be given to the personalization-privacy paradox to balance users' needs and privacy. ",
doi="10.2196/53402",
url="https://formative.jmir.org/2024/1/e53402",
url="http://www.ncbi.nlm.nih.gov/pubmed/38517461"
}


@Article{info:doi/10.2196/52049,
author="Gately, Elizabeth Megan
and Waller, E. Dylan
and Metcalf, E. Emily
and Moo, R. Lauren",
title="Caregivers' Role in In-Home Video Telehealth: National Survey of Occupational Therapy Practitioners",
journal="JMIR Rehabil Assist Technol",
year="2024",
month="Mar",
day="14",
volume="11",
pages="e52049",
keywords="telemedicine",
keywords="caregivers",
keywords="occupational therapy",
keywords="caregiver",
keywords="care worker",
keywords="telehealth",
keywords="older adults",
keywords="older adult",
keywords="geriatric",
keywords="rural",
keywords="remote",
keywords="OT practitioner",
keywords="web-based",
keywords="national survey",
keywords="role",
keywords="home care",
keywords="clinical support",
keywords="mobile phone",
abstract="Background: Older adults face barriers to specialty care, such as occupational therapy (OT), and these challenges are worse for rural older adults. While in-home video telehealth may increase access to OT, older adults' health- and technology-related challenges may necessitate caregiver assistance. Objective: This study examines caregiver assistance with in-home OT video telehealth visits from the perspectives of OT practitioners at Veterans Health Administration (VHA). Methods: A web-based national survey of VHA OT practitioners about caregivers' role in video telehealth was conducted between January and February 2022. Survey items were developed with input from subject matter experts in geriatrics and OT and identified patient factors that necessitate caregiver participation; the extent to which caregivers assist with different types of tasks (technological and clinical tasks); and the perceived facilitators of, benefits of, and barriers to caregiver involvement. Results: Of approximately 1787 eligible VHA OT practitioners, 286 (16\% response rate) participated. Not all survey items required completion, resulting in different denominators. Most respondents were female (183/226, 81\%), White (163/225, 72.4\%), and occupational therapists (275/286, 96.2\%). Respondents were from 87 VHA medical centers, the catchment areas of which served a patient population that was 34\% rural, on average (SD 0.22). Most participants (162/232, 69.8\%) had >10 years of OT experience serving a patient cohort mostly aged ?65 years (189/232, 81.5\%) in primarily outpatient rehabilitation (132/232, 56.9\%). The top patient factors necessitating caregiver involvement were lack of technical skills, cognitive impairment, and advanced patient age, with health-related impairments (eg, hearing or vision loss) less frequent. Technological tasks that caregivers most frequently assisted with were holding, angling, moving, repositioning, or operating the camera (136/250, 54.4\%) and enabling and operating the microphone and setting the volume (126/248, 50.8\%). Clinical tasks that caregivers most frequently assisted with were providing patient history (143/239, 59.8\%) and assisting with patient communication (124/240, 51.7\%). The top facilitator of caregiver participation was clinician-delivered caregiver education about what to expect from video telehealth (152/275, 55.3\%), whereas the top barrier was poor connectivity (80/235, 34\%). Increased access to video telehealth (212/235, 90.2\%) was the top-rated benefit of caregiver participation. Most respondents (164/232, 70.7\%) indicated that caregivers were at least sometimes unavailable or unable to assist with video telehealth, in which case the appointment often shifted to phone. Conclusions: Caregivers routinely assist VHA patients with in-home OT video visits, which is invaluable to patients who are older and have complex medical needs. Barriers to caregiver involvement include caregivers' challenges with video telehealth or inability to assist, or lack of available caregivers. By elucidating the caregiver support role in video visits, this study provides clinicians with strategies to effectively partner with caregivers to enhance older patients' access to video visits. ",
doi="10.2196/52049",
url="https://rehab.jmir.org/2024/1/e52049",
url="http://www.ncbi.nlm.nih.gov/pubmed/38483462"
}


@Article{info:doi/10.2196/53692,
author="Omar, Aminah Siti
and Zulkefly, Sheereen Nor
and Mukhtar, Firdaus",
title="The Effectiveness of Brain Injury Family Intervention in Improving the Psychological Well-Being of Caregivers of Patients With Traumatic Brain Injury: Protocol for a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2024",
month="Mar",
day="14",
volume="13",
pages="e53692",
keywords="traumatic brain injury",
keywords="TBI",
keywords="caregiver",
keywords="randomized controlled trial",
keywords="psychological well-being",
keywords="Malaysia",
abstract="Background: Globally, traumatic brain injury (TBI) is recognized as one of the most significant contributors to mortality and disability. Most of the patients who have experienced TBI will be discharged home and reunited with their families or primary caregivers. The degree of severity of their reliance on caregivers varies. Therefore, the task of delivering essential care to the patients becomes demanding for the caregivers. A significant proportion of caregivers expressed considerable burden, distress, and discontentment with their lives. Therefore, it is critical to comprehend the dynamic of TBI and caregivers to optimize patient care, rehabilitation, and administration. The effectiveness of the Brain Injury Family Intervention (BIFI) program tailored for caregivers of patients with TBI has been widely proven in Western countries. However, the impact is less clear among caregivers of patients with TBI in Malaysia. Objective: This study aims to assess the effectiveness of BIFI in reducing emotional distress and burden of care, fulfilling the needs, and increasing the life satisfaction of caregivers of patients with TBI at government hospitals in Malaysia. Methods: This is a 2-arm, single-blinded, randomized controlled trial. It will be conducted at Hospital Rehabilitasi Cheras and Hospital Sungai Buloh. In total, 100 caregivers of patients with TBI attending the neurorehabilitation unit will be randomized equally to the intervention and control groups. The intervention group will undergo the BIFI program, whereas the control group will receive standard treatment. Caregivers aged ?18 years, caring for patients who have completed >3 months after the injury, are eligible to participate. The BIFI program will be scheduled for 5 sessions as recommended by the developer of the module. Each session will take approximately 90 to 120 minutes. The participants are required to attend all 5 sessions. A total of 5 weeks is needed for each group to complete the program. Self-reported questionnaires (ie, Beck Depression Inventory, Positive and Negative Affect Schedule, Caregiver Strain Index, Satisfaction With Life Scale, and Family Needs Questionnaire) will be collected at baseline, immediately after the intervention program, at 3-month follow-up, and at 6-month follow-up. The primary end point is the caregivers' emotional distress. Results: The participant recruitment process began in January 2019 and was completed in December 2020. In total, 100 participants were enrolled in this study, of whom 70 (70\%) caregivers are women and 30 (30\%) are men. We are currently at the final stage of data analysis. The results of this study are expected to be published in 2024. Ethics approval has been obtained. Conclusions: It is expected that the psychological well-being of the intervention group will be better compared with that of the control group after the intervention at 3-month follow-up and at 6-month follow-up. Trial Registration: Iranian Registry of Clinical Trials IRCT20180809040746N1; https://irct.behdasht.gov.ir/trial/33286 International Registered Report Identifier (IRRID): RR1-10.2196/53692 ",
doi="10.2196/53692",
url="https://www.researchprotocols.org/2024/1/e53692",
url="http://www.ncbi.nlm.nih.gov/pubmed/38483466"
}


@Article{info:doi/10.2196/48292,
author="Kirby, Pippa
and Lai, Helen
and Horrocks, Sophie
and Harrison, Matthew
and Wilson, Danielle
and Daniels, Sarah
and Calvo, A. Rafael
and Sharp, J. David
and Alexander, M. Caroline",
title="Patient and Public Involvement in Technology-Related Dementia Research: Scoping Review",
journal="JMIR Aging",
year="2024",
month="Mar",
day="4",
volume="7",
pages="e48292",
keywords="dementia",
keywords="technology",
keywords="patient and public involvement and engagement",
keywords="co-design",
keywords="coproduction",
abstract="Background: Technology-related research on people with dementia and their carers often aims to enable people to remain living at home for longer and prevent unnecessary hospital admissions. To develop person-centered, effective, and ethical research, patient and public involvement (PPI) is necessary, although it may be perceived as more difficult with this cohort. With recent and rapid expansions in health and care--related technology, this review explored how and with what impact collaborations between researchers and stakeholders such as people with dementia and their carers have taken place. Objective: This review aims to describe approaches to PPI used to date in technology-related dementia research, along with the barriers and facilitators and impact of PPI in this area. Methods: A scoping review of literature related to dementia, technology, and PPI was conducted using MEDLINE, PsycINFO, Embase, and CINAHL. Papers were screened for inclusion by 2 authors. Data were then extracted using a predesigned data extraction table by the same 2 authors. A third author supported the resolution of any conflicts at each stage. Barriers to and facilitators of undertaking PPI were then examined and themed. Results: The search yielded 1694 papers, with 31 (1.83\%) being analyzed after screening. Most (21/31, 68\%) did not make clear distinctions between activities undertaken as PPI and those undertaken by research participants, and as such, their involvement did not fit easily into the National Institute for Health and Care Research definition of PPI. Most of this mixed involvement focused on reviewing or evaluating technology prototypes. A range of approaches were described, most typically using focus groups or co-design workshops. In total, 29\% (9/31) described involvement at multiple stages throughout the research cycle, sometimes with evidence of sharing decision-making power. Some (23/31, 74\%) commented on barriers to or facilitators of effective PPI. The challenges identified often regarded issues of working with people with significant cognitive impairments and pressures on time and resources. Where reported, the impact of PPI was largely reported as positive, including the experiences for patient and public partners, the impact on research quality, and the learning experience it provided for researchers. Only 4 (13\%) papers used formal methods for evaluating impact. Conclusions: Researchers often involve people with dementia and other stakeholders in technology research. At present, involvement is often limited in scope despite aspirations for high levels of involvement and partnership working. Involving people with dementia, their carers, and other stakeholders can have a positive impact on research, patient and public partners, and researchers. Wider reporting of methods and facilitative strategies along with more formalized methods for recording and reporting on meaningful impact would be helpful so that all those involved---researchers, patients, and other stakeholders---can learn how we can best conduct research together. ",
doi="10.2196/48292",
url="https://aging.jmir.org/2024/1/e48292",
url="http://www.ncbi.nlm.nih.gov/pubmed/38437014"
}


@Article{info:doi/10.2196/49492,
author="Zheng, Amy
and Bergh, Marissa
and Patel Murali, Komal
and Sadarangani, Tina",
title="Using mHealth to Improve Communication in Adult Day Services Around the Needs of People With Dementia: Mixed Methods Assessment of Acceptability and Feasibility",
journal="JMIR Form Res",
year="2024",
month="Mar",
day="1",
volume="8",
pages="e49492",
keywords="adult day services",
keywords="primary health care",
keywords="health communication",
keywords="dementia",
keywords="mobile health",
keywords="mHealth",
keywords="community-based",
keywords="health care",
keywords="older adults",
keywords="older adult",
keywords="chronic condition",
keywords="health information",
keywords="feasibility",
keywords="acceptability",
keywords="CareMOBI",
keywords="mixed methods design",
keywords="caregivers",
keywords="caregiver",
keywords="care workers",
keywords="nurses",
keywords="social workers",
abstract="Background: Adult day services (ADS) provide community-based health care for older adults with complex chronic conditions but rely on outdated methods for communicating users' health information with providers. CareMOBI, a novel mobile health (mHealth) app, was developed to address the need for a technological platform to improve bidirectional information exchange and communication between the ADS setting and providers. Objective: This study aims to examine the feasibility and acceptability of CareMOBI in the ADS setting. Methods: A concurrent-triangulation mixed methods design was used, and participants were client-facing ADS staff members, including direct care workers (paid caregivers), nurses, and social workers. Interviews were conducted to describe barriers and facilitators to the adoption of the CareMOBI app. The acceptability of the app was measured using an adapted version of the Technology Acceptance Model questionnaire. Data were integrated into 4 themes as anchors of an informational matrix: ease of use, clinical value, fit within workflow, and likelihood of adoption. Results: A mix of ADS staff (N=22) participated in the study. Participants reported high levels of acceptability across the 4 domains. Qualitative findings corroborated the questionnaire results; participants viewed the app as useful and were likely to implement CareMOBI in their practice. However, participants expressed a need for proper training and technical support throughout the implementation process. Conclusions: The CareMOBI app has the potential to improve care management in the ADS setting by promoting effective communication through an easy-to-use and portable method. While the integration of CareMOBI is acceptable and feasible, developing role-specific training modules and technical assistance programs is imperative for successful implementation within the ADS setting. ",
doi="10.2196/49492",
url="https://formative.jmir.org/2024/1/e49492",
url="http://www.ncbi.nlm.nih.gov/pubmed/38427418"
}


@Article{info:doi/10.2196/52284,
author="Lussier, Maxime
and Couture, M{\'e}lanie
and Giroux, Sylvain
and Aboujaoud{\'e}, Aline
and Ngankam, Kenfack Hubert
and Pigot, H{\'e}l{\`e}ne
and Gaboury, S{\'e}bastien
and Bouchard, Kevin
and Bottari, Carolina
and Belchior, Patricia
and Par{\'e}, Guy
and Bier, Nathalie",
title="Codevelopment and Deployment of a System for the Telemonitoring of Activities of Daily Living Among Older Adults Receiving Home Care Services: Protocol for an Action Design Research Study",
journal="JMIR Res Protoc",
year="2024",
month="Feb",
day="29",
volume="13",
pages="e52284",
keywords="action design research",
keywords="protocol",
keywords="activities of daily living",
keywords="older adults",
keywords="cognitive deficits",
keywords="telemonitoring",
keywords="public health care system",
keywords="home care services",
abstract="Background: Telemonitoring of activities of daily living (ADLs) offers significant potential for gaining a deeper insight into the home care needs of older adults experiencing cognitive decline, particularly those living alone. In 2016, our team and a health care institution in Montreal, Quebec, Canada, sought to test this technology to enhance the support provided by home care clinical teams for older adults residing alone and facing cognitive deficits. The Support for Seniors' Autonomy program (SAPA [Soutien {\`a} l'autonomie des personnes {\^a}g{\'e}es]) project was initiated within this context, embracing an innovative research approach that combines action research and design science. Objective: This paper presents the research protocol for the SAPA project, with the aim of facilitating the replication of similar initiatives in the future. The primary objectives of the SAPA project were to (1) codevelop an ADL telemonitoring system aligned with the requirements of key stakeholders, (2) deploy the system in a real clinical environment to identify specific use cases, and (3) identify factors conducive to its sustained use in a real-world setting. Given the context of the SAPA project, the adoption of an action design research (ADR) approach was deemed crucial. ADR is a framework for crafting practical solutions to intricate problems encountered in a specific organizational context. Methods: This project consisted of 2 cycles of development (alpha and beta) that involved cyclical repetitions of stages 2 and 3 to develop a telemonitoring system for ADLs. Stakeholders, such as health care managers, clinicians, older adults, and their families, were included in each codevelopment cycle. Qualitative and quantitative data were collected throughout this project. Results: The first iterative cycle, the alpha cycle, took place from early 2016 to mid 2018. The first prototype of an ADL telemonitoring system was deployed in the homes of 4 individuals receiving home care services through a public health institution. The prototype was used to collect data about care recipients' ADL routines. Clinicians used the data to support their home care intervention plan, and the results are presented here. The prototype was successfully deployed and perceived as useful, although obstacles were encountered. Similarly, a second codevelopment cycle (beta cycle) took place in 3 public health institutions from late 2018 to late 2022. The telemonitoring system was installed in 31 care recipients' homes, and detailed results will be presented in future papers. Conclusions: To our knowledge, this is the first reported ADR project in ADL telemonitoring research that includes 2 iterative cycles of codevelopment and deployment embedded in the real-world clinical settings of a public health system. We discuss the artifacts, generalization of learning, and dissemination generated by this protocol in the hope of providing a concrete and replicable example of research partnerships in the field of digital health in cognitive aging. International Registered Report Identifier (IRRID): RR1-10.2196/52284 ",
doi="10.2196/52284",
url="https://www.researchprotocols.org/2024/1/e52284",
url="http://www.ncbi.nlm.nih.gov/pubmed/38422499"
}


@Article{info:doi/10.2196/53010,
author="Dawson, Rik
and Gilchrist, Heidi
and Pinheiro, Marina
and Nelson, Karn
and Bowes, Nina
and Sherrington, Cathie
and Haynes, Abby",
title="Experiences of Older Adults, Physiotherapists, and Aged Care Staff in the TOP UP Telephysiotherapy Program: Interview Study of the TOP UP Interventions",
journal="JMIR Aging",
year="2024",
month="Feb",
day="7",
volume="7",
pages="e53010",
keywords="physiotherapy",
keywords="telehealth",
keywords="telephysiotherapy",
keywords="exercise",
keywords="aged care",
keywords="qualitative methods",
keywords="behavior change",
keywords="technology",
keywords="virtual care",
abstract="Background: Telehealth provides opportunities for older adults to access health care. However, limited research exists on the use of telehealth within aged care services, particularly regarding physiotherapy-led fall prevention and mobility programs. Understanding the experiences and interactions of older adults, physiotherapists, and aged care service providers is crucial for the scale-up and sustainability of such essential programs. The TOP UP study, a hybrid type 1 effectiveness-implementation randomized controlled trial in aged care, used a supported multidisciplinary telephysiotherapy model to motivate older adults to engage in exercises to improve mobility and reduce falls. Objective: This qualitative substudy aims to achieve 2 primary objectives: to describe the experiences and acceptability of the TOP UP intervention for older people, physiotherapists, and aged care support workers and managers and to gain an in-depth understanding of program implementation. Methods: A purposive recruitment strategy was used to select 18 older adults who participated in the TOP UP intervention, ensuring variation in age, gender, residential status (home or residential aged care), geographic location, and cognitive levels. In addition, 7 physiotherapists, 8 aged care support workers, and 6 managers from 7 different aged care provider partners participated in this study. Semistructured interviews were conducted to explore stakeholders' experiences with the TOP UP program, gather suggestions for improvement, and obtain insights for the future implementation of similar telephysiotherapy programs. The interview framework and coding processes were informed by behavior changes and implementation frameworks. Data were analyzed using an abductive approach, informed by 2 behavioral change theories (Capability, Opportunity, Motivation, and Behavior Model and Self-Determination Theory) and the Nonadoption, Abandonment and Challenges to the Scale-Up, Spread and Sustainability of Health and Care Technologies framework. Results: All participants (n=39) reported high levels of acceptability for the TOP UP program and cited multiple perceived benefits. The thematic analysis generated 6 main themes: telephysiotherapy expands opportunity; tailored physiotherapy care with local support enhances motivation; engaging, older adult--friendly educational resources build capability; flexible reablement approach fosters autonomy; telephysiotherapy is safe, effective, and acceptable for many; and organizational commitment is required to embed telehealth. The motivation to exercise was enhanced by Zoom's convenience, use of tailored web-based exercise resources, and companionable local support. Conclusions: This study highlights the inherent value of telephysiotherapy in aged care, emphasizing the need for investment in staff training, local support, and older adult--friendly resources in future telephysiotherapy iterations. TOP UP represents a convenient and flexible web-based care model that empowers many older adults to receive sustainable, high-quality care precisely when and where they need it. Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN 1261000734864; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12621000734864 ",
doi="10.2196/53010",
url="https://aging.jmir.org/2024/1/e53010",
url="http://www.ncbi.nlm.nih.gov/pubmed/38324369"
}


@Article{info:doi/10.2196/48132,
author="Onseng, Pansiree
and Jiraporncharoen, Wichuda
and Moonkayaow, Sasiwimon
and Veerasirikul, Pimchai
and Wiwatkunupakarn, Nutchar
and Angkurawaranon, Chaisiri
and Pinyopornpanish, Kanokporn",
title="Expectation, Attitude, and Barriers to Receiving Telehomecare Among Caregivers of Homebound or Bedridden Older Adults: Qualitative Study",
journal="JMIR Aging",
year="2024",
month="Feb",
day="7",
volume="7",
pages="e48132",
keywords="telehomecare",
keywords="telemedicine",
keywords="telehealth",
keywords="caregivers",
keywords="older adults",
keywords="attitudes",
abstract="Background: In recent years, telehomecare has become an increasingly important option for health care providers to deliver continuous care to their patients. Objective: This study aims to explore the expectations, attitudes, and barriers to telehomecare among caregivers of homebound or bedridden older adults. Methods: This qualitative study used semistructured interviews to explore caregivers' perspectives on telehomecare for homebound or bedridden older adults. The study adhered to the SRQR (Standards for Reporting Qualitative Research) guidelines. Participants were selected using convenience sampling from caregivers of homebound or bedridden older adults with experience in both in-person home visits and telehomecare services provided by the Department of Family Medicine at Chiang Mai University, in an urban area of Chiang Mai Province in Northern Thailand. Semistructured interviews were conducted. The interviews were audio recorded with participant consent and transcribed verbatim. The framework method was used, involving multiple readings of transcripts to facilitate familiarization and accuracy checking. The study used the technology acceptance model and comprehensive geriatric assessment as the analytical framework. Results: The study included 20 caregivers of older adult patients. The patients were predominantly female (15/20, 75\%), with an average age of 86.2 years. Of these patients, 40\% (n=8) of patients were bedridden, and 60\% (n=12) of patients were homebound. Caregivers expressed generally positive attitudes toward telehomecare. They considered it valuable for overall health assessment, despite recognizing certain limitations, particularly in physical assessments. Psychological assessments were perceived as equally effective. While in-person visits offered more extensive environmental assessments, caregivers found ways to make telehomecare effective. Telehomecare facilitated multidisciplinary care, enabling communication with specialists. Caregivers play a key role in care planning and adherence. Challenges included communication issues due to low volume, patient inattention, and faulty devices and internet signals. Some caregivers helped overcome these barriers. The loss of information was mitigated by modifying signaling equipment. Technology use was a challenge for some older adult caregivers. Despite these challenges, telehomecare offered advantages in remote communication and resolving scheduling conflicts. Caregivers varied in their preferences. Some preferred in-person visits for a broader view, while others favored telehomecare for its convenience. Some had no strong preference, appreciating both methods, while others considered the situation and patient conditions when choosing between them. Increased experience with telehomecare led to more confidence in its use. Conclusions: Caregivers have positive attitudes and high expectations for telehomecare services. Although there may be barriers to receiving care through this mode, caregivers have demonstrated the ability to overcome these challenges, which has strengthened their confidence in telehomecare. However, it is important to enhance the skills of caregivers and health care teams to overcome barriers and optimize the use of telehomecare. ",
doi="10.2196/48132",
url="https://aging.jmir.org/2024/1/e48132",
url="http://www.ncbi.nlm.nih.gov/pubmed/38324373"
}


@Article{info:doi/10.2196/51544,
author="Bauernschmidt, Dorothee
and Wittmann, Janina
and Hirt, Julian
and Meyer, Gabriele
and Bieber, Anja",
title="The Implementation Success of Technology-Based Counseling in Dementia Care: Scoping Review",
journal="JMIR Aging",
year="2024",
month="Jan",
day="25",
volume="7",
pages="e51544",
keywords="implementation success",
keywords="implementation outcomes",
keywords="counseling",
keywords="technology",
keywords="dementia",
abstract="Background: Implementing technology-based counseling as a complex intervention in dementia care poses challenges such as adaptation to stakeholders' needs and limited resources. While studies have examined the effectiveness of technology-based counseling, its successful implementation remains largely unexplored. Objective: We aimed to review the knowledge about the implementation success of technology-based counseling interventions for people with dementia and their informal caregivers. Methods: We conducted a scoping review and systematically searched CINAHL, the Cochrane Library including the Cochrane Central Register of Controlled Trials, MEDLINE, PsycINFO, and Web of Science Core Collection databases (April 2021) in combination with citation searching and web searching (November 2021). Studies reporting on technology-based counseling interventions for people with dementia or their informal caregivers were included, irrespective of the design. We used the conceptual framework for implementation outcomes to operationalize implementation success and applied the outcomes acceptability, adoption, appropriateness, feasibility, fidelity, implementation cost, penetration, and sustainability as categories to inform data extraction. We identified dimensions within the categories and synthesized results narratively and graphically. Results: We included 52 publications reporting on 27 technology-based counseling interventions. The studies were conducted in 9 countries and published between 1993 and 2021. As the design of the included studies varied, the number of participants and the type of data reported varied as well. The intervention programs were heterogeneous and ranged from single counseling interventions (such as helpline services) to counseling as part of a multicomponent program. Telephone, email, videoconferencing, social media (respectively chats), and web-based platforms were used for delivering counseling. We found data on appropriateness for all interventions and data on acceptability for most interventions, describing aspects such as consumer-perceived usefulness and helpfulness of services, as well as satisfaction. Information on the other categories of adoption, feasibility, fidelity, implementation cost, penetration, and sustainability was fragmented. Conclusions: The scope and depth of information on conceptual categories of the implementation success of technology-based counseling for people with dementia and informal caregivers varied. The data only partially covered the concept of implementation success, which highlights the need for a systematic evaluation accompanying the implementation. The application of theoretical approaches for implementation and adherence to the framework for developing and evaluating complex interventions are required to promote the implementation of complex interventions and to comprehensively assess implementation success. Trial Registration: PROSPERO CRD42021245473; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=245473 ",
doi="10.2196/51544",
url="https://aging.jmir.org/2024/1/e51544",
url="http://www.ncbi.nlm.nih.gov/pubmed/38271050"
}


@Article{info:doi/10.2196/46941,
author="Messina, Anna
and Amati, Rebecca
and Annoni, Maria Anna
and Bano, Beatrice
and Albanese, Emiliano
and Fiordelli, Maddalena",
title="Culturally Adapting the World Health Organization Digital Intervention for Family Caregivers of People With Dementia (iSupport): Community-Based Participatory Approach",
journal="JMIR Form Res",
year="2024",
month="Jan",
day="24",
volume="8",
pages="e46941",
keywords="informal caregivers",
keywords="iSupport",
keywords="dementia",
keywords="digital interventions",
keywords="mHealth",
keywords="community-based participatory research",
keywords="community",
keywords="caregiver",
keywords="mental distress",
keywords="physical distress",
keywords="support",
keywords="development",
abstract="Background: Informal caregivers of people with dementia are at high risk of developing mental and physical distress because of the intensity of the care provided. iSupport is an evidence-based digital program developed by the World Health Organization to provide education and support for the informal everyday care of people living with dementia. Objective: Our study aims to describe in detail the cultural adaptation process of iSupport in Switzerland. We specifically focused on the participatory strategies we used to design a culturally adapted, Swiss version of iSupport that informed the development of the desktop version, mobile app, and printed manual. Methods: We used a mixed methods design, with a community-based participatory approach. The adaptation of iSupport followed the World Health Organization adaptation guidelines and was developed in 4 phases: content translation, linguistic and cultural revision by the members of the community advisory board, validation with formal and informal caregivers, and refinement and final adaptation. Results: The findings from each phase showed and consolidated the adjustments needed for a culturally adapted, Swiss version of iSupport. We collected feedback and implemented changes related to the following areas: language register and expressions (eg, from ``lesson'' to ``chapter'' and from ``suffering from'' dementia to ``affected by'' dementia), resources (hyperlinks to local resources for dementia), contents (eg, from general nonfamiliar scenarios to local and verisimilar examples), graphics (eg, from generalized illustrations of objects to human illustrations), and extra features (eg, a glossary, a forum session, and a read-aloud option, as well as a navigation survey). Conclusions: Our study provides evidence on how to culturally adapt a digital program for informal caregivers of people living with dementia. Our results suggest that adopting a community-based participatory approach and collecting lived experiences from the final users and stakeholders is crucial to meet local needs and to inform the further development, testing, and implementation of digital interventions in a specific cultural context. ",
doi="10.2196/46941",
url="https://formative.jmir.org/2024/1/e46941",
url="http://www.ncbi.nlm.nih.gov/pubmed/38265857"
}


@Article{info:doi/10.2196/48587,
author="Silaule, Olindah
and Casteleijn, Daleen
and Adams, Fasloen
and Nkosi, Gloria Nokuthula",
title="Strategies to Alleviate the Burden Experienced by Informal Caregivers of Persons With Severe Mental Disorders in Low- and Middle-Income Countries: Scoping Review",
journal="Interact J Med Res",
year="2024",
month="Jan",
day="18",
volume="13",
pages="e48587",
keywords="severe mental disorders",
keywords="informal caregivers",
keywords="caregiver stress",
keywords="caregiver support",
keywords="low- and middle-income country",
keywords="mobile phone",
abstract="Background: There is considerable evidence of the burden of care encountered by informal caregivers of persons with severe and enduring mental health conditions in low- and middle-income countries. Previous studies have highlighted the need to support these informal caregivers as key players in the care of these patients. To date, limited evidence exists on the extent and types of strategies for supporting these informal caregivers in low- and middle-income countries. Objective: This scoping review aims to identify and describe the extent and type of evidence on the existing strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions in low- and middle-income countries. Methods: A systematic literature search was completed following the Joanna Briggs Institute methodology for scoping reviews. The participants, concept, and context framework was used to guide the search for literature sources across 5 databases: PubMed, MEDLINE, CINAHL, and PsycINFO for published literature and ProQuest for unpublished literature. This review included studies that reported on strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions, with a focus on studies that evaluated or recommended caregiver interventions and support strategies in low- and middle-income countries. The search was limited to studies conducted between 2001 and 2021, and only papers written in English were considered for inclusion. Using the Covidence software (Veritas Health Innovation), 2 reviewers independently screened the papers, applied the inclusion and exclusion criteria, and met biweekly to discuss and resolve conflicts. The relevant studies and reported outcomes were summarized, organized, and analyzed descriptively using numeric summary analysis and deductive content analysis. Results: Of the 18,342 studies identified, 44 (0.24\%) met the inclusion criteria. The included studies were from 16 low- and middle-income countries in Asia, Africa, Europe, and South and North America. Most studies (21/44, 48\%) were randomized controlled trials conducted in Asian countries. The identified strategies were grouped into 2 categories: implemented and recommended intervention strategies. Identified strategies included community-based interventions, psychoeducation interventions, support groups, cognitive behavioral therapy, spirituality-based interventions, and smartphone-based interventions. In addition, mindfulness and empowerment, collaborative interventions, standard care, financial and social support, counseling, occupation-based interventions, policy and legislature, and access to mental health care were identified. Psychoeducation and support group interventions were identified as common strategies for alleviating the burden of care among informal caregivers of persons with severe and enduring mental health conditions. Conclusions: This review provides evidence on the types of implemented and recommended strategies for alleviating the burden of care among informal caregivers in low- and middle-income countries. Although psychoeducational interventions were the most preferred strategy for alleviating burden, their benefits were short-lived when compared with peer-led support groups. International Registered Report Identifier (IRRID): RR2-10.2196/44268 ",
doi="10.2196/48587",
url="https://www.i-jmr.org/2024/1/e48587",
url="http://www.ncbi.nlm.nih.gov/pubmed/38236636"
}


@Article{info:doi/10.2196/53671,
author="Garcia, N. Celeste
and Duran, C. Miriana
and Ramirez, Magaly",
title="Refining Cultural Adaptations of a Behavioral Intervention for Latino Caregivers of People Living With Dementia: Qualitative Interview Study in Washington State",
journal="JMIR Aging",
year="2024",
month="Jan",
day="11",
volume="7",
pages="e53671",
keywords="caregivers",
keywords="caregiver",
keywords="caregiving",
keywords="carer",
keywords="carers",
keywords="STAR-C",
keywords="STAR caregiver",
keywords="internet",
keywords="web-based",
keywords="online",
keywords="educational",
keywords="education",
keywords="family care",
keywords="family",
keywords="families",
keywords="informal care",
keywords="adaptation",
keywords="adaptations",
keywords="cultural",
keywords="culturally",
keywords="module",
keywords="modules",
keywords="training",
keywords="Hispanic",
keywords="Hispanics",
keywords="Spanish",
keywords="Latin",
keywords="Latina",
keywords="Latinas",
keywords="Latinos",
keywords="Latinx",
keywords="Latino",
keywords="dementia",
keywords="qualitative research",
keywords="Alzheimer disease",
keywords="qualitative",
keywords="Alzheimer",
keywords="experience",
keywords="experiences",
keywords="attitude",
keywords="attitudes",
keywords="opinion",
keywords="perception",
keywords="perceptions",
keywords="perspective",
keywords="perspectives",
keywords="aging",
keywords="older adults",
keywords="old age",
keywords="mental health",
keywords="neuro",
keywords="ageing",
keywords="geriatrics",
keywords="gerontology",
keywords="geriatric",
keywords="interview",
keywords="eHealth",
keywords="digital health",
keywords="alzheimers",
keywords="memory",
keywords="memory loss",
keywords="care giving",
keywords="Hispanic or Latino",
keywords="mobile phone",
abstract="Background: ?In the United States, Latino caregivers of individuals with dementia face unique challenges and an elevated risk of adverse health outcomes. Despite the increasing prevalence of Alzheimer disease and related dementias among Latino adults, few evidence-based interventions are tailored to their cultural context. To address this gap, we examined the cultural adaptations required for the STAR caregivers (STAR-C) virtual intervention, an evidence-based intervention that educates family caregivers to manage behavioral and psychological symptoms of dementia. While STAR-C has shown effectiveness, neither the original in-person nor the virtual intervention considered the distinct experiences of Latino caregivers, who often bring culturally significant values into caregiving interactions. Objective: This study's objective was to test and refine the preliminary cultural adaptations of the STAR-C web-based training modules for Latino caregivers of people living with dementia. Methods: Through qualitative interviews with 15 Latino caregivers in Washington State, we identified key adaptations to enhance the cultural relevance of the web-based training modules. Results: The interviews highlighted 4 main themes for adaptation: the delivery of the STAR-C web-based training modules, comprehensive dementia education, simplified problem-solving strategies, and prioritizing caregiver well-being. Conclusions: This study's findings informed the development of culturally adapted STAR-C web-based training modules that aim to provide tailored support to Latino caregivers. While further research is needed to assess the efficacy of these adaptations, our work contributes to bridging the gap in dementia caregiving for Latino families, potentially reducing health disparities and enhancing health care services for this population. ",
doi="10.2196/53671",
url="https://aging.jmir.org/2024/1/e53671",
url="http://www.ncbi.nlm.nih.gov/pubmed/38206663"
}


@Article{info:doi/10.2196/50548,
author="Groulx, Mark
and Freeman, Shannon
and Gourlay, Keone
and Hemingway, Dawn
and Rossnagel, Emma
and Chaudhury, Habib
and Nouri, Mohammadjavad",
title="Monitoring and Evaluation of Dementia-Friendly Neighborhoods Using a Walkshed Approach: Protocol for a Scoping Review",
journal="JMIR Res Protoc",
year="2024",
month="Jan",
day="3",
volume="13",
pages="e50548",
keywords="dementia-friendly",
keywords="neighborhood",
keywords="persons living with dementia",
keywords="walkability",
keywords="walkshed",
abstract="Background: The number of people in society living with dementia is growing. In Canada, most people who live with dementia live at home, often in a neighborhood setting. Neighborhood environments can be a source of independence, social engagement, and well-being. They can also contain barriers that limit physical activity, social engagement, and well-being. A dementia-friendly neighborhood includes assets that support persons living with dementia and their caregivers in multiple life domains, including those that support walking within the neighborhood environment. Objective: The objectives for this scoping review are twofold. First, focusing on walkshed analysis, we aim to extend scholarly understandings of methodological practices used in the monitoring and evaluation of dementia-friendly neighborhoods. Second, we aim to provide clear and practical guidance for those working in planning, design, and public health fields to assess the neighborhood context in support of evidence-based action to improve the lives of persons living with dementia. Methods: The study design follows Arksey and O'Malley's scoping review framework and PRISMA-P (Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols) guidelines. We will conduct a search of peer-reviewed studies in 6 electronic databases to identify the use of Geographic Information System analysis to measure the walkshed of persons living with dementia in a community setting. As age is a primary risk factor associated with dementia, we will also include studies that focus more broadly on community-dwelling older adults aged 65 years and older. Data will be extracted, analyzed, and represented according to 3 domains. This includes study details, walkshed analysis methods, and criteria and indicators used to measure dementia-friendly neighborhoods. Results: The results of the study and the submission of a manuscript for peer review are expected in June 2024. The results of the review are expected to contribute to an understanding of methods for monitoring and evaluating dementia-friendly neighborhoods. Expected findings will include a detailed breakdown of current parameters and routines used to conduct walkshed analysis. Findings will also convey criteria that can be operationalized in a Geographic Information System as indicators to assess barriers and facilitators to walking in a neighborhood setting. Conclusions: As far as we are aware, the proposed scoping review will be the first to provide comprehensive methodological or technical guidance for conducting walkshed analysis specific to persons living with dementia. Both the scalability and objective nature of walkshed analysis are likely to be of direct interest to public health practitioners, planners, and allied professionals. Clearly documenting methods used in walkshed analysis can spur increased collaboration across these disciplines to enable an evidence-informed approach to improving neighborhood environments for persons living with dementia. International Registered Report Identifier (IRRID): PRR1-10.2196/50548 ",
doi="10.2196/50548",
url="https://www.researchprotocols.org/2024/1/e50548",
url="http://www.ncbi.nlm.nih.gov/pubmed/38170573"
}


@Article{info:doi/10.2196/52799,
author="Rochon, A. Elizabeth
and Sy, Maimouna
and Phillips, Mirelle
and Anderson, Erik
and Plys, Evan
and Ritchie, Christine
and Vranceanu, Ana-Maria",
title="Bio-Experiential Technology to Support Persons With Dementia and Care Partners at Home (TEND): Protocol for an Intervention Development Study",
journal="JMIR Res Protoc",
year="2023",
month="Dec",
day="29",
volume="12",
pages="e52799",
keywords="dementia",
keywords="dyadic",
keywords="bio-experiential",
keywords="serious gaming",
keywords="psychosocial",
abstract="Background: Alzheimer disease and related dementias are debilitating and incurable diseases. Persons with dementia and their informal caregivers (ie, dyads) experience high rates of emotional distress and negative health outcomes. Several barriers prevent dyads from engaging in psychosocial care including cost, transportation, and a lack of treatments that target later stages of dementia and target the dyad together. Technologically informed treatment and serious gaming have been shown to be feasible and effective among persons living with dementia and their care partners. To increase access, there is a need for technologically informed psychosocial interventions which target the dyad, together in the home. Objective: This study aims to develop the toolkit for experiential well-being in dementia, a dyadic, ``bio-experiential'' intervention for persons with dementia and their caregivers. Per our conceptual model, the toolkit for experiential well-being in dementia platform aims to target sustained attention, positive emotions, and active engagement among dyads. In this paper, we outline the protocol and conceptual model for intervention development and partnership with design and development experts. Methods: We followed the National Institutes of Health (NIH) stage model (stage 1A) and supplemented the model with principles of user-centered design. The first step includes understanding user needs, goals, and strengths. We met this step by engaging in methodology and definition synthesis and conducting focus groups with dementia care providers (N=10) and persons with dementia and caregivers (N=11). Step 2 includes developing and refining the prototype. We will meet this step by engaging dyads in up to 20 iterations of platform $\beta$ testing workshops. Step 3 includes observing user interactions with the prototype. We will meet this step by releasing the platform for feasibility testing. Results: Key takeaways from the focus groups include balancing individualization and the dyadic relationship and avoiding confusing stimuli. As of September 2023, we have completed focus groups with providers, persons with dementia, and their caregivers. Additionally, we have conducted 4 iterations of $\beta$ testing workshops with dyads. Feedback from focus groups informed the $\beta$ testing workshops; data have not yet been formally analyzed and will be reported in future publications. Conclusions: Technological interventions, particularly ``bio-experiential'' technology, can be used in dementia care to support emotional health among persons with a diagnosis and caregivers. Here, we outline a collaborative intervention development process of bio-experiential technology through a research, design, and development partnership. Next, we are planning to test the platform's feasibility as well as its impact on clinical outcomes and mechanisms of action. International Registered Report Identifier (IRRID): DERR1-10.2196/52799 ",
doi="10.2196/52799",
url="https://www.researchprotocols.org/2023/1/e52799",
url="http://www.ncbi.nlm.nih.gov/pubmed/38157239"
}


@Article{info:doi/10.2196/45035,
author="Benmessaoud, Camila
and Pfisterer, J. Kaylen
and De Leon, Anjelica
and Saragadam, Ashish
and El-Dassouki, Noor
and Young, M. Karen G.
and Lohani, Raima
and Xiong, Ting
and Pham, Quynh",
title="Design of a Dyadic Digital Health Module for Chronic Disease Shared Care: Development Study",
journal="JMIR Hum Factors",
year="2023",
month="Dec",
day="25",
volume="10",
pages="e45035",
keywords="digital therapeutics",
keywords="disease management",
keywords="heart failure",
keywords="informal caregivers",
keywords="mHealth",
keywords="mobile health",
keywords="shared care",
keywords="telemedicine",
abstract="Background: The COVID-19 pandemic forced the spread of digital health tools to address limited clinical resources for chronic health management. It also illuminated a population of older patients requiring an informal caregiver (IC) to access this care due to accessibility, technological literacy, or English proficiency concerns. For patients with heart failure (HF), this rapid transition exacerbated the demand on ICs and pushed Canadians toward a dyadic care model where patients and ICs comanage care. Our previous work identified an opportunity to improve this dyadic HF experience through a shared model of dyadic digital health. We call this alternative model of care ``Caretown for Medly,'' which empowers ICs to concurrently expand patients' self-care abilities while acknowledging ICs' eagerness to provide greater support. Objective: We present the systematic design and development of the Caretown for Medly dyadic management module. While HF is the outlined use case, we outline our design methodology and report on 6 core disease-invariant features applied to dyadic shared care for HF management. This work lays the foundation for future usability assessments of Caretown for Medly. Methods: We conducted a qualitative, human-centered design study based on 25 semistructured interviews with self-identified ICs of loved ones living with HF. Interviews underwent thematic content analysis by 2 coders independently for themes derived deductively (eg, based on the interview guide) and inductively refined. To build the Caretown for Medly model, we (1) leveraged the Knowledge to Action (KTA) framework to translate knowledge into action and (2) borrowed Google Sprint's ability to quickly ``solve big problems and test new ideas,'' which has been effective in the medical and digital health spaces. Specifically, we blended these 2 concepts into a new framework called the ``KTA Sprint.'' Results: We identified 6 core disease-invariant features to support ICs in care dyads to provide more effective care while capitalizing on dyadic care's synergistic benefits. Features were designed for customizability to suit the patient's condition, informed by stakeholder analysis, corroborated with literature, and vetted through user needs assessments. These features include (1) live reports to enhance data sharing and facilitate appropriate IC support, (2) care cards to enhance guidance on the caregiving role, (3) direct messaging to dissolve the disconnect across the circle of care, (4) medication wallet to improve guidance on managing complex medication regimens, (5) medical events timeline to improve and consolidate management and organization, and (6) caregiver resources to provide disease-specific education and support their self-care. Conclusions: These disease-invariant features were designed to address ICs' needs in supporting their care partner. We anticipate that the implementation of these features will empower a shared model of care for chronic disease management through digital health and will improve outcomes for care dyads. ",
doi="10.2196/45035",
url="https://humanfactors.jmir.org/2023/1/e45035",
url="http://www.ncbi.nlm.nih.gov/pubmed/38145480"
}


@Article{info:doi/10.2196/44166,
author="Bratches, R. Reed W.
and Wall, A. Jaclyn
and Puga, Frank
and Pilonieta, Giovanna
and Jablonski, Rita
and Bakitas, Marie
and Geldmacher, S. David
and Odom, Nicholas J.",
title="Patient Portal Use Among Family Caregivers of Individuals With Dementia and Cancer: Regression Analysis From the National Study of Caregiving",
journal="JMIR Aging",
year="2023",
month="Dec",
day="20",
volume="6",
pages="e44166",
keywords="patient portal",
keywords="palliative care",
keywords="family caregiver",
keywords="caregiver",
keywords="dementia",
keywords="cancer",
keywords="clinic",
keywords="age",
keywords="race",
keywords="gender",
keywords="employment",
keywords="education",
keywords="model",
keywords="ethnicity",
keywords="health system",
keywords="intervention",
keywords="regression analysis",
abstract="Background: Family caregivers are often inexperienced and require information from clinic visits to effectively provide care for patients. Despite reported deficiencies, 68\% of health systems facilitate sharing information with family caregivers through the patient portal. The patient portal is especially critical in the context of serious illnesses, like advanced cancer and dementia, where caregiving is intense and informational needs change over the trajectory of disease progression. Objective: The objective of our study was to analyze a large, nationally representative sample of family caregivers from the National Study of Caregiving (NSOC) to determine individual characteristics and demographic factors associated with patient portal use among family caregivers of persons living with dementia and those living with cancer. Methods: We conducted a secondary data analysis using data from the 2020 NSOC sample of family caregivers linked to National Health and Aging Trends Study. Weighted regression analysis by condition (ie, dementia or cancer) was used to examine associations between family caregiver use of the patient portal and demographic variables, including age, race or ethnicity, gender, employment status, caregiver health, education, and religiosity. Results: A total of 462 participants (representing 4,589,844 weighted responses) were included in our analysis. In the fully adjusted regression model for caregivers of persons living with dementia, Hispanic ethnicity was associated with higher odds of patient portal use (OR: 2.81, 95\% CI 1.05-7.57; P=.04), whereas qualification lower than a college degree was associated with lower odds of patient portal use by family caregiver (OR 0.36, 95\% CI 0.18-0.71; P<.001. In the fully adjusted regression model for caregivers of persons living with cancer, no variables were found to be statistically significantly associated with patient portal use at the .05 level. Conclusions: In our analysis of NSOC survey data, we found differences between how dementia and cancer caregivers access the patient portal. As the patient portal is a common method of connecting caregivers with information from clinic visits, future research should focus on understanding how the portal is used by the groups we have identified, and why. ",
doi="10.2196/44166",
url="https://aging.jmir.org/2023/1/e44166"
}


@Article{info:doi/10.2196/46858,
author="Daynes-Kearney, Rosemary
and Gallagher, Stephen",
title="Online Support Groups for Family Caregivers: Scoping Review",
journal="J Med Internet Res",
year="2023",
month="Dec",
day="13",
volume="25",
pages="e46858",
keywords="caregivers",
keywords="carer",
keywords="caregiver",
keywords="caregiving",
keywords="informal care",
keywords="family care",
keywords="unpaid care",
keywords="spousal care",
keywords="carers",
keywords="online support groups",
keywords="scoping review",
keywords="review methods",
keywords="review methodology",
keywords="social support",
keywords="review",
keywords="support",
keywords="peer support",
keywords="online support",
keywords="development",
keywords="communication",
keywords="psychosocial",
keywords="life experience",
keywords="caregiver needs",
keywords="engagement",
abstract="Background: Caregiving can affect people of all ages and can have significant negative health impacts on family caregivers themselves. Research has shown that social support acts as a buffer against many negative health impacts. A common source of social support is support groups. Although traditionally, these groups were conducted in a face-to-face setting, the advent of the internet, social media applications, and the smartphone have seen online support groups (OSGs) develop as a space where many caregivers seek support. The number of OSGs has increased exponentially, but there is no clear consensus on what factors or characteristics of OSGs contribute to social support development within them or what types of OSGs are available to family caregivers. Objective: This study aimed to conduct a scoping review to contribute to the understanding of the types and characteristics of OSGs for family caregivers. Methods: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, the CINAHL, PsychInfo, Psych Articles, Social Sciences, Communication Source, Medline, and Web of Science databases were searched for studies (caregiver focused, adults aged 18 years or older, online social support groups, caring for a living person, peer-reviewed journal publications on empirical research). In total, 19 studies were included in the review. The research questions were (1) what type of social support groups are online for adult family caregivers, (2) what the communication mediums and characteristics of these OSGs are, and (3) what psychosocial or other factors make OSGs successful or unsuccessful for participants. Results: In response to the first research question, we found that the majority of OSGs took place on public text-based forums and were illness specific. Where demographics were reported, participants were predominately women, White, and working with university-level education. There were a variety of caregiving relationships. For the second research question, the most common communication medium found was text-based communication, with the use of emojis, photos, and GIF (Graphics Interchange Format) files as part of these exchanges. Most frequently, the OSGs were asynchronous with a degree of anonymity, not time-limited by the frequency of contact or duration, and moderated by peer or professional moderators or facilitators. Results for the third research question explored the overarching categories of safe communication and engagement and group management. These described successful OSGs as having a focus on similar others with shared lived experiences communicated in a nonjudgmental space overseen by trained peer or professional facilitators. Conclusions: There are several key considerations for OSGs to be successful for family caregivers. A general recommendation for practitioners is to give importance to building active moderation and multifaceted structures of support to meet different levels of caregiver needs and the ability to engage. ",
doi="10.2196/46858",
url="https://www.jmir.org/2023/1/e46858",
url="http://www.ncbi.nlm.nih.gov/pubmed/38090796"
}


@Article{info:doi/10.2196/48063,
author="Martinho, Diogo
and Crista, V{\'i}tor
and Carneiro, Jo{\~a}o
and Matsui, Kenji
and Corchado, Manuel Juan
and Marreiros, Goreti",
title="Effects of a Gamified Agent-Based System for Personalized Elderly Care: Pilot Usability Study",
journal="JMIR Serious Games",
year="2023",
month="Nov",
day="23",
volume="11",
pages="e48063",
keywords="gamification",
keywords="cognitive assistants",
keywords="elderly care",
keywords="coaching system",
keywords="older people",
keywords="technology",
keywords="virtual assistant",
keywords="cognitive",
keywords="usability",
keywords="intervention",
keywords="physical activity",
keywords="agent-based system",
abstract="Background: The global percentage of older people has increased significantly over the last decades. Information and communication technologies have become essential to develop and motivate them to pursue healthier ways of living. This paper examines a personalized coaching health care service designed to maintain living conditions and active aging among older people. Among the technologies the service includes, we highlight the use of both gamification and cognitive assistant technologies designed to support older people and an application combining a cognitive virtual assistant to directly interact with the older person and provide feedback on their current health condition and several gamification techniques to motivate the older person to stay engaged with the application and pursuit of healthier daily habits. Objective: This pilot study aimed to investigate the feasibility and usability of a gamified agent-based system for older people and obtain preliminary results on the effectiveness of the intervention regarding physical activity health outcomes. Methods: The study was designed as an intervention study comparing pre- and posttest results. The proposed gamified agent-based system was used by 12 participants over 7 days (1 week), and step count data were collected with access to the Google Fit application programming interface. Step count data after the intervention were compared with average step count data before the intervention (average daily values over a period of 4 weeks before the intervention). A?1-tailed Student t test was used to determine the relationship between the dependent and independent variables. Usability was measured using the System Usability Scale questionnaire, which was answered by 8 of the 12 participants in the study. Results: The posttest results showed significant pre- to posttest changes (P=.30; 1-tailed Student t test) with a moderate effect size (Cohen d=0.65). The application obtained an average usability score of 78. Conclusions: The presented pilot was validated, showing the positive health effects of using gamification techniques and a virtual cognitive assistant. Additionally, usability metrics considered for this study confirmed high adherence and interest from most participants in the pilot. ",
doi="10.2196/48063",
url="https://games.jmir.org/2023/1/e48063",
url="http://www.ncbi.nlm.nih.gov/pubmed/37995116"
}


@Article{info:doi/10.2196/53150,
author="Guay-B{\'e}langer, Sabrina
and Aubin, Emmanuelle
and Cimon, Marie
and Archambault, Patrick
and Blanchette, Virginie
and Giguere, Anik
and Gogovor, Am{\'e}d{\'e}
and Morin, Mich{\`e}le
and Ben Charif, Ali
and Ben Gaied, Nouha
and Bickerstaff, Julie
and Ch{\'e}nard, Nancy
and Emond, Julie
and Gilbert, Julie
and Violet, Isabelle
and L{\'e}gar{\'e}, France",
title="Engagement of Older Adults Receiving Home Care Services and Their Caregivers in Health Decisions in Partnership With Clinical Teams: Protocol for a Multimethod Study to Prioritize and Culturally Adapt Decision Aids for Home Care",
journal="JMIR Res Protoc",
year="2023",
month="Nov",
day="20",
volume="12",
pages="e53150",
keywords="shared decision making",
keywords="patient-centered care",
keywords="home care",
keywords="older adults",
keywords="caregivers",
keywords="decision aids",
keywords="scalability assessment",
keywords="innovation scalability self-administered questionnaire",
keywords="interprofessional",
keywords="team based",
abstract="Background: Older adults (people aged 65 years and older) face many difficult decisions. Patient decision aids (PtDAs) can help them and their families make informed value-congruent decisions. Some PtDAs have been developed for the home care context, but little is known about scaling them for use with older adults in a different culture. Objective: This study aims to (1) assess the scalability of existing PtDAs for older adults in the home care context; (2) prioritize those that best match the decisional needs of older adults in home care; and (3) culturally adapt the prioritized PtDAs so they can be scaled successfully to the Quebec health care system. Methods: This multimethod study includes 3 phases. All phases will be overseen by a steering committee of older adults, caregivers, health professionals, decision makers, community organization representatives, and researchers with the needed expertise. In phase 1, we will use the Innovation Scalability Self-administered Questionnaire, a validated scalability self-assessment tool, to assess the scalability of 33 PtDAs previously identified in a systematic review. Based on their scalability, their quality (based on the International Patient Decision Aids Standards), and the importance of the decision point, we will retain approximately a third of these. In phase 2, we will conduct a 2-round web-based Delphi to prioritize the PtDAs selected in phase 1. Using a snowball recruitment strategy, we aim to recruit 60 Delphi participants in the province of Quebec, including older adults, caregivers, health professionals, decision makers involved in home care services, and PtDA experts. In the first round, we will ask participants to rate the importance of several PtDA decision points according to various criteria such as prevalence and difficulty on a 5-point Likert scale (1=not important to 5=very important). Approximately 6 of the highest-rated PtDAs will be retained for presentation in the second round, and we will select up to 3 PtDAs judged as having the highest priority for cultural adaptation. In phase 3, using the Chenel framework and user-centered design methods, we will update and adapt the PtDAs to the Quebec health care system and integrate these PtDAs into an interprofessional shared decision-making training program for home care teams. The adapted PtDAs will respect the International Patient Decision Aids Standards criteria. Results: This study was funded in March 2022 by the Canadian Institutes of Health Research. Data collection for the web-based Delphi began in October 2023. Results are expected to be published in May 2024. Conclusions: This project will provide relevant and culturally appropriate decision support tools for older adults making difficult decisions and their home care teams that will be ready for scaling across the province of Quebec. International Registered Report Identifier (IRRID): PRR1-10.2196/53150 ",
doi="10.2196/53150",
url="https://www.researchprotocols.org/2023/1/e53150",
url="http://www.ncbi.nlm.nih.gov/pubmed/37889512"
}


@Article{info:doi/10.2196/48193,
author="Ni, Congning
and Song, Qingyuan
and Malin, Bradley
and Song, Lijun
and Commiskey, Patricia
and Stratton, Lauren
and Yin, Zhijun",
title="Examining Online Behaviors of Adult-Child and Spousal Caregivers for People Living With Alzheimer Disease or Related Dementias: Comparative Study in an Open Online Community",
journal="J Med Internet Res",
year="2023",
month="Nov",
day="17",
volume="25",
pages="e48193",
keywords="Alzheimer disease or related dementias",
keywords="informal caregivers",
keywords="adult-child caregivers",
keywords="spousal caregivers",
keywords="online community",
keywords="sentiment analysis",
keywords="topic modeling",
keywords="text classification",
abstract="Background: Alzheimer disease or related dementias (ADRD) are severe neurological disorders that impair the thinking and memory skills of older adults. Most persons living with dementia receive care at home from their family members or other unpaid informal caregivers; this results in significant mental, physical, and financial challenges for these caregivers. To combat these challenges, many informal ADRD caregivers seek social support in online environments. Although research examining online caregiving discussions is growing, few investigations have distinguished caregivers according to their kin relationships with persons living with dementias. Various studies have suggested that caregivers in different relationships experience distinct caregiving challenges and support needs. Objective: This study aims to examine and compare the online behaviors of adult-child and spousal caregivers, the 2 largest groups of informal ADRD caregivers, in an open online community. Methods: We collected posts from ALZConnected, an online community managed by the Alzheimer's Association. To gain insights into online behaviors, we first applied structural topic modeling to identify topics and topic prevalence between adult-child and spousal caregivers. Next, we applied VADER (Valence Aware Dictionary for Sentiment Reasoning) and LIWC (Linguistic Inquiry and Word Count) to evaluate sentiment changes in the online posts over time for both types of caregivers. We further built machine learning models to distinguish the posts of each caregiver type and evaluated them in terms of precision, recall, F1-score, and area under the precision-recall curve. Finally, we applied the best prediction model to compare the temporal trend of relationship-predicting capacities in posts between the 2 types of caregivers. Results: Our analysis showed that the number of posts from both types of caregivers followed a long-tailed distribution, indicating that most caregivers in this online community were infrequent users. In comparison with adult-child caregivers, spousal caregivers tended to be more active in the community, publishing more posts and engaging in discussions on a wider range of caregiving topics. Spousal caregivers also exhibited slower growth in positive emotional communication over time. The best machine learning model for predicting adult-child, spousal, or other caregivers achieved an area under the precision-recall curve of 81.3\%. The subsequent trend analysis showed that it became more difficult to predict adult-child caregiver posts than spousal caregiver posts over time. This suggests that adult-child and spousal caregivers might gradually shift their discussions from questions that are more directly related to their own experiences and needs to questions that are more general and applicable to other types of caregivers. Conclusions: Our findings suggest that it is important for researchers and community organizers to consider the heterogeneity of caregiving experiences and subsequent online behaviors among different types of caregivers when tailoring online peer support to meet the specific needs of each caregiver group. ",
doi="10.2196/48193",
url="https://www.jmir.org/2023/1/e48193",
url="http://www.ncbi.nlm.nih.gov/pubmed/37976095"
}


@Article{info:doi/10.2196/50038,
author="Premanandan, Shweta
and Ahmad, Awais
and Cajander, {\AA}sa
and {\AA}gerfalk, P{\"a}r
and Dolezel, Michal
and van Gemert-Pijnen, Lisette",
title="Designing a Mobile e-Coaching App for Immigrant Informal Caregivers: Qualitative Study Using the Persuasive System Design Model",
journal="JMIR Mhealth Uhealth",
year="2023",
month="Nov",
day="9",
volume="11",
pages="e50038",
keywords="e-coaching",
keywords="mobile health",
keywords="mHealth",
keywords="immigrant informal caregivers",
keywords="designing app",
keywords="persuasive system design",
keywords="user needs",
keywords="caregiver",
keywords="app",
keywords="design",
keywords="users",
keywords="aging",
keywords="development",
keywords="diversity",
keywords="language barrier",
keywords="inclusion",
keywords="training",
keywords="mental health",
keywords="mobile phone",
abstract="Background: Informal caregivers are vital in caring for their family and friends at home who may have illnesses or disabilities. In particular, the demands for caregiving can be even more challenging for those with limited resources, support systems, and language barriers, such as immigrant informal caregivers. They face complex challenges in providing care for their relatives. These challenges can be related to sociocultural diversity, language barriers, and health care system navigation. Acknowledging the global context of the increasing number of immigrants is essential in designing inclusive mobile health apps. Objective: This study aims to investigate the needs of immigrant informal caregivers in Sweden and discuss the application of the Persuasive System Design Model (PSDM) to develop an e-coaching prototype. By addressing the unique challenges faced by immigrant informal caregivers, this study will contribute to the development of more effective and inclusive mobile health apps. Methods: The participants were considered immigrants and included in the study if they and their parents were born outside of Sweden. Through various channels, such as the National Association of Relatives, rehabilitation departments at municipalities, and immigrant groups, we recruited 13 immigrant informal caregivers. These immigrant informal caregivers were primarily women aged 18 to 40 years. Most participants belonged to the Middle Eastern region whereas some were from North Africa. However, all of them spoke Arabic. We used semistructured interviews to gather data from the participants in Arabic, which were translated into English. Data were analyzed using thematic analysis and discussed in relation to the extended PSDM. The needs of the caregivers were compared with the description of persuasive design principles, and a design principle was chosen based on the match. The PSDM was extended if the need description did not match any principles. Several brainstorming and prototyping sessions were conducted to design the mobile e-coaching app. Results: Immigrant informal caregivers have various needs in their caregiving role. They reported a need for training on the illness and future caregiving needs, assistance with understanding the Swedish language and culture, and help with accessing internet-based information and services. They also required recognition and appreciation for their efforts, additional informal support, and easy access to health care services, which can be important for their mental health. The PSDM was adapted to the informal caregiving context by adding ``facilitating conditions'' and ``verbal encouragement'' as additional persuasive design principles. This study also presents the subsequent mobile e-coaching app for immigrant informal caregivers in Sweden. Conclusions: This study revealed important immigrant informal caregivers' needs based on which design suggestions for a mobile e-coaching app were presented. We also proposed an adapted PSDM, for the informal caregiving context. The adapted PSDM can be further used to design digital interventions for caregiving. ",
doi="10.2196/50038",
url="https://mhealth.jmir.org/2023/1/e50038",
url="http://www.ncbi.nlm.nih.gov/pubmed/37943598"
}


@Article{info:doi/10.2196/50037,
author="Gui, Fang
and Yang, Jiaoyun
and Wu, Qilin
and Liu, Yang
and Zhou, Jia
and An, Ning",
title="Enhancing Caregiver Empowerment Through the Story Mosaic System: Human-Centered Design Approach for Visualizing Older Adult Life Stories",
journal="JMIR Aging",
year="2023",
month="Nov",
day="8",
volume="6",
pages="e50037",
keywords="life story visualization",
keywords="Story Mosaic system",
keywords="human-centered design",
keywords="prototype refinement workshops",
keywords="eldercare",
keywords="caregiver",
keywords="elder",
keywords="older adult",
abstract="Background: Various older adult care settings have embraced the use of the life story approach to enhance the development of comprehensive care plans. However, organizing life stories and extracting useful information is labor-intensive, primarily due to the repetitive, fragmented, and redundant nature of life stories gathered from everyday communication scenarios. Existing life story systems, while available, do not adequately fulfill the requirements of users, especially in the application of care services. Objective: The objective of this study is to design, develop, and evaluate a digital system that provides caregivers with the necessary tools to view and manage the life stories of older adults, enabling expedited access to pertinent information effectively and visually. Methods: This study used a multidisciplinary, user-centered design approach across 4 phases: initial design requirements, prototyping, prototype refinement workshops, and usability testing. During the initial phase, we conducted field research in the Hefei Tianyu Senior Living Service Nursing Home, China, to discover how caregivers currently store and use life stories and their needs, challenges, and obstacles in organizing and retrieving information. Subsequently, we designed a low-fidelity prototype according to the users' requirements. A prototyping workshop involving 6 participants was held to collaboratively design and discuss the prototype's function and interaction. User feedback from the workshops was used to optimize the prototype, leading to the development of the system. We then designed 2 rounds of usability testing with 7 caregivers to evaluate the system's usability and effectiveness. Results: We identified 3 categories of functionalities that are necessary to include in the design of our initial low-fidelity prototype of life story visualizations: life story input, life story organization, and timeline generation. Subsequently, through the workshops, we identified 3 categories for functional optimization: feedback on user interface and usability, optimization suggestions for existing features, and the request for additional functionalities. Next, we designed a medium-fidelity prototype based on human-centered design. The Story Mosaic system underwent usability testing in the Hefei Tianyu Senior Living Service Nursing Home. Overall, 7 users recorded and organized 1123 life stories of 16 older adults. The usability testing results indicated that the system was accessible and easy to use for caregivers. Based on the feedback from the usability testing, we finalized the high-fidelity prototype. Conclusions: We designed, developed, and evaluated the Story Mosaic system to support the visual management of older adults' life stories. This system empowers caregivers through digital technology and innovative design, pioneering personal narrative integration in caregiving. This system can expand to include informal caregivers and family members for continued adaptability and empathy. ",
doi="10.2196/50037",
url="https://aging.jmir.org/2023/1/e50037"
}


@Article{info:doi/10.2196/47586,
author="de Ruiter, Hans-Peter
and Clisbee, David
and Houston, Rebecca
and Sk{\"a}rs{\"a}ter, Ingela",
title="The Ethical, Care, and Client-Caregiver Relationship Impacts Resulting From Introduction of Digital Communication and Surveillance Technologies in the Home Setting: Qualitative Inductive Study",
journal="JMIR Hum Factors",
year="2023",
month="Nov",
day="3",
volume="10",
pages="e47586",
keywords="home care",
keywords="caregivers",
keywords="ethical implications",
keywords="communication technology",
keywords="surveillance technology",
keywords="public health nursing practices",
keywords="digital vulnerability",
keywords="care of the elderly",
abstract="Background: Embedding communication and surveillance technology into the home health care setting has demonstrated the capacity for increased data efficiency, assumptions of convenience, and smart solutions to pressing problems such as caregiver shortages amid a rise in the aging population. The race to develop and implement these technologies within home care and public health nursing often leaves several ethical questions needing to be answered. Objective: The aim of this study was to understand the ethical and care implications of implementing digital communication and surveillance technologies in the home setting as perceived by health caregivers practicing in the region of Halland in Sweden with clients receiving home care services. Methods: A questionnaire was completed by 1260 home health caregivers and the written responses were evaluated by qualitative inductive content analysis. The researchers reviewed data independently and consensus was used to determine themes. Results: This study identified three main themes that illustrate ethical issues and unintended effects as perceived by caregivers of introducing digital communication and surveillance technologies in the home: (1) digital dependence vulnerability, (2) moral distress, and (3) interruptions to caregiving. This study highlights the consequences of technology developers and health systems leaders unintentionally ignoring the perspectives of caregivers who practice the intuitive artistry of providing care to other humans. Conclusions: Beyond the obtrusiveness of devices and impersonal data collection designed to emphasize health care system priorities, this study discovered a multifaceted shadow side of unintended consequences that arise from misalignment between system priorities and caregiver expertise, resulting in ethical issues. To develop communication and surveillance technologies that meet the needs of all stakeholders, it is important to involve caregivers who work with clients in the development process of new health care technology to improve both the quality of life of clients and the services offered by caregivers. ",
doi="10.2196/47586",
url="https://humanfactors.jmir.org/2023/1/e47586",
url="http://www.ncbi.nlm.nih.gov/pubmed/37921843"
}


@Article{info:doi/10.2196/47624,
author="Longacre, L. Margaret
and Chwistek, Marcin
and Keleher, Cynthia
and Siemon, Mark
and Egleston, L. Brian
and Collins, Molly
and Fang, Y. Carolyn",
title="Patient-Caregiver Portal System in Palliative Oncology: Assessment of Usability and Perceived Benefit",
journal="JMIR Hum Factors",
year="2023",
month="Nov",
day="2",
volume="10",
pages="e47624",
keywords="caregiving",
keywords="patient portal, health policy",
keywords="palliative oncology",
keywords="oncology",
keywords="engagement",
keywords="family caregiver",
keywords="caregiver",
keywords="communication",
keywords="usage",
keywords="usability",
keywords="clinical care",
keywords="cancer",
abstract="Background: The engagement of family caregivers in oncology is not universal or systematic. Objective: We implemented a process intervention (ie, patient-caregiver portal system) with an existing patient portal system to (1) allow a patient to specify their caregiver and communication preferences with that caregiver, (2) connect the caregiver to a unique caregiver-specific portal page to indicate their needs, and (3) provide an electronic notification of the dyad's responses to the care team to inform clinicians and connect the caregiver to resources as needed. Methods: We assessed usability and satisfaction with this patient-caregiver portal system among patients with cancer receiving palliative care, their caregivers, and clinicians. Results: Of 31 consented patient-caregiver dyads, 20 patients and 19 caregivers logged in. Further, 60\% (n=12) of patients indicated a preference to communicate equally or together with their caregiver. Caregivers reported high emotional (n=9, 47.3\%), financial (n=6, 31.6\%), and physical (n=6, 31.6\%) caregiving-related strain. The care team received all patient-caregiver responses electronically. Most patients (86.6\%, 13/15 who completed the user experience interview) and caregivers (94\%, 16/17 who completed the user experience interview) were satisfied with the system, while, of the 6 participating clinicians, 66.7\% agreed ``quite a bit'' (n=1, 16.7\%) or ``very much'' (n=3, 50\%) that the system allowed them to provide better care. Conclusions: Our findings demonstrate system usability, including a systematic way to identify caregiver needs and share with the care team in a way that is acceptable to patients and caregivers and perceived by clinicians to benefit clinical care. Integration of a patient-caregiver portal system may be an effective approach for systematically engaging caregivers. These findings highlight the need for additional research among caregivers of patients with less advanced cancer or with different illnesses. ",
doi="10.2196/47624",
url="https://humanfactors.jmir.org/2023/1/e47624",
url="http://www.ncbi.nlm.nih.gov/pubmed/37917129"
}


@Article{info:doi/10.2196/49319,
author="Sharma, Nikita
and Braakman-Jansen, A. Louise M.
and Oinas-Kukkonen, Harri
and Croockewit, Hendrik Jan
and Gemert-Pijnen, van JEWC",
title="Exploring the Needs and Requirements of Informal Caregivers of Older Adults With Cognitive Impairment From Sensor-Based Care Solutions: Multimethod Study",
journal="JMIR Aging",
year="2023",
month="Oct",
day="25",
volume="6",
pages="e49319",
keywords="informal caregiving",
keywords="cognitive impairment",
keywords="unobtrusive sensing solutions",
keywords="in-home care",
keywords="aging in place",
keywords="assistive technologies",
abstract="Background: With the increase in the older adult population, sensor-based care solutions that can monitor the deviations in physical, emotional, and physiological activities in real-time from a distance are demanded for prolonging the stay of community-dwelling older adults with cognitive impairment. To effectively develop and implement these care solutions, it is important to understand the current experiences, future expectations, perceived usefulness (PU), and communication needs of the informal caregivers of older adults with cognitive impairment regarding such solutions. Objective: This comprehensive study with informal caregivers of older adults with cognitive impairment aims to (1) highlight current experiences with (if any) and future expectations from general sensor-based care solutions, (2) explore PU specifically toward unobtrusive sensing solutions (USSs), (3) determine the information communication (IC) needs and requirements for communicating the information obtained through USSs in different care scenarios (fall, nocturnal unrest, agitation, and normal daily life), and (4) elicit the design features for designing the interaction platform in accordance with the persuasive system design (PSD) model. Methods: A multimethod research approach encompassing a survey (N=464) and in-depth interviews (10/464, 2.2\%) with informal caregivers of older adults with cognitive impairment was used. The insights into past experiences with and future expectations from the sensor-based care solutions were obtained through inductive thematic analysis of the interviews. A convergent mixed methods approach was used to explore PU and gather the IC needs from USSs by using scenario-specific questions in both survey and interviews. Finally, the design features were elicited by using the PSD model on the obtained IC needs and requirements. Results: Informal caregivers expect care infrastructure to consider centralized and empathetic care approaches. Specifically, sensor-based care solutions should be adaptable to care needs, demonstrate trust and reliability, and ensure privacy and safety. Most informal caregivers found USSs to be useful for emergencies (mean 4.09, SD 0.04) rather than for monitoring normal daily life activities (mean 3.50, SD 0.04). Moreover, they display variations in information needs including mode, content, time, and stakeholders involved based on the care scenario at hand. Finally, PSD features, namely, reduction, tailoring, personalization, reminders, suggestions, trustworthiness, and social learning, were identified for various care scenarios. Conclusions: From the obtained results, it can be concluded that the care scenario at hand drives PU and IC design needs and requirements toward USSs. Therefore, future technology developers are recommended to develop technology that can be easily adapted to diverse care scenarios, whereas designers of such sensor-driven platforms are encouraged to go beyond tailoring and strive for strong personalization while maintaining the privacy of the users. ",
doi="10.2196/49319",
url="https://aging.jmir.org/2023/1/e49319",
url="http://www.ncbi.nlm.nih.gov/pubmed/37878353"
}


@Article{info:doi/10.2196/46995,
author="Matos Queir{\'o}s, Alcina
and von Gunten, Armin
and Rosselet Amoussou, Jo{\"e}lle
and Martins, Manuela Maria
and Verloo, Henk",
title="Relationship Between Depression and Falls Among Nursing Home Residents: Protocol for an Integrative Review",
journal="JMIR Res Protoc",
year="2023",
month="Oct",
day="19",
volume="12",
pages="e46995",
keywords="depression",
keywords="falls",
keywords="nursing homes",
keywords="nursing home residents",
keywords="older adults",
keywords="fall risk",
keywords="intervention",
abstract="Background: Aging exposes individuals to new health disorders and debilitating chronic diseases, yet most older adults, even in functional decline, do not want to leave their homes. Nevertheless, for many, institutionalization in a nursing home (NH) may become essential to ensure their continued safety and health. Depression is one of the most common psychiatric disorders among older adults, especially among those who are institutionalized. Depressed NH residents face a high risk of future functional decline and falls, decreasing their quality of life. The relationship between depression and falls is complex and bidirectional. Previous reviews have focused on home-dwelling older adults or explored the relationship between antidepressant drugs and falls. To the best of our knowledge, no integrative literature reviews have explored the relationship between depression and falls among NH residents. Objective: Analyze studies on the relationship between depression and falls among NH residents. Methods: We will conduct an integrative literature review of published articles in relevant scientific journals on the relationship between depression and depressive symptomatology and falls among NH residents. As usually defined, we will consider NH residents to be people aged 65 years and older who can no longer live safely and independently in their homes. We will also consider older adults on short-term stays in an NH for rehabilitation after hospital discharge. Retrieved articles will be screened for eligibility and analyzed following previously reported steps. The most pertinent bibliographical databases will be examined for qualitative, quantitative, and mixed methods studies, from inception until August 31, 2023, thus ensuring that all relevant literature is included. We will also hand-search the bibliographies of all the relevant articles found and search for unpublished studies in any language. If appropriate, we will consider conducting a meta-analysis of the studies retrieved. Results: A first round of data collection was completed in March 2023. We retrieved a total of 2276 references. A supplementary literature search to ensure the most up-to-date evidence is ongoing. We anticipate that the review will be completed in late September 2023, and we expect to publish results at the end of December 2023. Conclusions: This integrative review will increase knowledge and understanding of the complex relationship between depression and falls in NH environments. Its findings will be important for developing integrated, multidisciplinary models and care recommendations, adaptable to each NH resident's situation and health status, and for creating preventive interventions to help them maintain or recover optimal health stability. International Registered Report Identifier (IRRID): DERR1-10.2196/46995 ",
doi="10.2196/46995",
url="https://www.researchprotocols.org/2023/1/e46995",
url="http://www.ncbi.nlm.nih.gov/pubmed/37856175"
}


@Article{info:doi/10.2196/50108,
author="Woodworth, C. Emily
and Briskin, A. Ellie
and Plys, Evan
and Macklin, Eric
and Tatar, G. Raquel
and Huberty, Jennifer
and Vranceanu, Ana-Maria",
title="Mindfulness-Based App to Reduce Stress in Caregivers of Persons With Alzheimer Disease and Related Dementias: Protocol for a Single-Blind Feasibility Proof-of-Concept Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2023",
month="Oct",
day="13",
volume="12",
pages="e50108",
keywords="caregiver",
keywords="dementia",
keywords="mindfulness",
keywords="mobile app",
keywords="protocol",
keywords="randomized controlled trial",
abstract="Background: Informal caregivers (ie, individuals who provide assistance to a known person with health or functional needs, often unpaid) experience high levels of stress. Caregiver stress is associated with negative outcomes for both caregivers and care recipients. Mindfulness-based interventions (MBIs) show promise for improving stress, emotional distress, and sleep disturbance in caregivers of persons with Alzheimer disease and related dementias (ADRD). Commercially available mobile mindfulness apps can deliver MBIs to caregivers of persons with ADRD in a feasible and cost-effective manner. Objective: We are conducting a single-blind feasibility proof-of-concept randomized controlled trial (RCT; National Institutes of Health [NIH] stage 1B) comparing 2 free mobile apps: the active intervention Healthy Minds Program (HMP) with within-app text tailored for addressing stress among caregivers of persons with ADRD, versus Wellness App (WA), a time- and dose-matched educational control also tailored for caregivers of persons with ADRD. Methods: We aim to recruit 80 geographically diverse and stressed caregivers of persons with ADRD. Interested caregivers use a link or QR code on a recruitment flyer to complete a web-based eligibility screener. Research assistants conduct enrollment phone calls, during which participants provide informed consent digitally. After participants complete baseline surveys, we randomize them to the mindfulness-based intervention (HMP) or educational control podcast app (WA) and instruct them to listen to prescribed content for 10 minutes per day (70 minutes per week) for 12 weeks. Caregivers are blinded to intervention versus control. The study team checks adherence weekly and contacts participants to promote adherence as needed. Participants complete web-based self-report measures at baseline, posttest, and follow-up; weekly process measures are also completed. Primary outcomes are a priori set feasibility benchmarks. Secondary outcomes are stress, emotional distress, sleep disturbance, caregiver burden, mindfulness, awareness, connection, insight, and purpose. We will calculate 1-sided 95\% CI to assess feasibility benchmarks. Effect sizes of change in outcomes will be used to examine the proof of concept. Results: Recruitment started on February 20, 2023. We have enrolled 27 caregivers (HMP: n=14; WA: n=13) as of June 2023. Funding began in August 2022, and we plan to finish enrollment by December 2023. Data analysis is expected to begin in May 2024 when all follow-ups are complete; publication of findings will follow. Conclusions: Through this trial, we aim to establish feasibility benchmarks for HMP and WA, as well as establish a proof of concept that HMP improves stress (primary quantitative outcome), emotional distress, sleep, and mindfulness more than WA. Results will inform a future efficacy trial (NIH stage II). HMP has the potential to be a cost-effective solution to reduce stress in caregivers of persons with ADRD, benefiting caregiver health and quality of care as well as patient care. Trial Registration: ClinicalTrials.gov NCT05732038; https://clinicaltrials.gov/study/NCT05732038 International Registered Report Identifier (IRRID): DERR1-10.2196/50108 ",
doi="10.2196/50108",
url="https://www.researchprotocols.org/2023/1/e50108",
url="http://www.ncbi.nlm.nih.gov/pubmed/37831492"
}


@Article{info:doi/10.2196/46188,
author="Ye, Bing
and Chu, H. Charlene
and Bayat, Sayeh
and Babineau, Jessica
and How, Tuck-Voon
and Mihailidis, Alex",
title="Researched Apps Used in Dementia Care for People Living With Dementia and Their Informal Caregivers: Systematic Review on App Features, Security, and Usability",
journal="J Med Internet Res",
year="2023",
month="Oct",
day="12",
volume="25",
pages="e46188",
keywords="mobile technologies",
keywords="mobile apps",
keywords="dementia",
keywords="privacy",
keywords="security",
keywords="usability testing",
keywords="informal caregivers",
keywords="mobile phone",
abstract="Background: Studies have shown that mobile apps have the potential to serve as nonpharmacological interventions for dementia care, improving the quality of life of people living with dementia and their informal caregivers. However, little is known about the needs for and privacy aspects of these mobile apps in dementia care. Objective: This review seeks to understand the landscape of existing mobile apps in dementia care for people living with dementia and their caregivers with respect to app features, usability testing, privacy, and security. Methods: ACM Digital Library, Cochrane Central Register of Controlled Trials, Compendex, Embase, Inspec, Ovid MEDLINE, PsycINFO, and Scopus were searched. Studies were included if they included people with dementia living in the community, their informal caregivers, or both; focused on apps in dementia care using smartphones or tablet computers; and covered usability evaluation of the app. Records were independently screened, and 2 reviewers extracted the data. The Centre for Evidence-Based Medicine critical appraisal tool and Mixed Methods Appraisal Tool were used to assess the risk of bias in the included studies. Thematic synthesis was used, and the findings were summarized and tabulated based on each research aim. Results: Overall, 44 studies were included in this review, with 39 (89\%) published after 2015. In total, 50 apps were included in the study, with more apps developed for people living with dementia as end users compared with caregivers. Most studies (27/44, 61\%) used tablet computers. The most common app feature was cognitive stimulation. This review presented 9 app usability themes: user interface, physical considerations, screen size, interaction challenges, meeting user needs, lack of self-awareness of app needs, stigma, technological inexperience, and technical support. In total, 5 methods (questionnaires, interviews, observations, logging, and focus groups) were used to evaluate usability. There was little focus on the privacy and security aspects, including data transfer and protection, of mobile apps for people living with dementia. Conclusions: The limitations of this review include 1 reviewer conducting the full-text screening, its restriction to studies published in English, and the exclusion of apps that lacked empirical usability testing. As a result, there may be an incomplete representation of the available apps in the field of dementia care. However, this review highlights significant concerns related to the usability, privacy, and security of existing mobile apps for people living with dementia and their caregivers. The findings of this review provide a valuable framework to guide app developers and researchers in the areas of privacy policy development, app development strategies, and the importance of conducting thorough usability testing for their apps. By considering these factors, future work in this field can be advanced to enhance the quality and effectiveness of dementia care apps. Trial Registration: PROSPERO CRD42020216141; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=216141 International Registered Report Identifier (IRRID): RR2-10.1159/000514838 ",
doi="10.2196/46188",
url="https://www.jmir.org/2023/1/e46188",
url="http://www.ncbi.nlm.nih.gov/pubmed/37824187"
}


@Article{info:doi/10.2196/45788,
author="Leng, Minmin
and Sun, Yue
and Li, Ce
and Han, Shuyu
and Wang, Zhiwen",
title="Usability Evaluation of a Knowledge Graph--Based Dementia Care Intelligent Recommender System: Mixed Methods Study",
journal="J Med Internet Res",
year="2023",
month="Sep",
day="26",
volume="25",
pages="e45788",
keywords="caregivers",
keywords="dementia",
keywords="knowledge graph",
keywords="recommender system",
keywords="usability evaluation",
keywords="dementia care intelligent recommender system",
keywords="DCIRS",
abstract="Background: Knowledge graph--based recommender systems offer the possibility of meeting the personalized needs of people with dementia and their caregivers. However, the usability of such a recommender system remains unknown. Objective: This study aimed to evaluate the usability of a knowledge graph--based dementia care intelligent recommender system (DCIRS). Methods: We used a convergent mixed methods design to conduct the usability evaluation, including the collection of quantitative and qualitative data. Participants were recruited through social media advertisements. After 2 weeks of DCIRS use, feedback was collected with the Computer System Usability Questionnaire and semistructured interviews. Descriptive statistics were used to describe sociodemographic characteristics and questionnaire scores. Qualitative data were analyzed systematically using inductive thematic analysis. Results: A total of 56 caregivers were recruited. Quantitative data suggested that the DCIRS was easy for caregivers to use, and the mean questionnaire score was 2.14. Qualitative data showed that caregivers generally believed that the content of the DCIRS was professional, easy to understand, and instructive, and could meet users' personalized needs; they were willing to continue to use it. However, the DCIRS also had some shortcomings. Functions that enable interactions between professionals and caregivers and that provide caregiver support and resource recommendations might be added to improve the system's usability. Conclusions: The recommender system provides a solution to meet the personalized needs of people with dementia and their caregivers and has the potential to substantially improve health outcomes. The next step will be to optimize and update the recommender system based on caregivers' suggestions and evaluate the effect of the application. ",
doi="10.2196/45788",
url="https://www.jmir.org/2023/1/e45788",
url="http://www.ncbi.nlm.nih.gov/pubmed/37751241"
}


@Article{info:doi/10.2196/41185,
author="Dale, Jeremy
and Nanton, Veronica
and Day, Theresa
and Apenteng, Patricia
and Bernstein, Janine Celia
and Grason Smith, Gillian
and Strong, Peter
and Procter, Rob",
title="Uptake and Use of Care Companion, a Web-Based Information Resource for Supporting Informal Carers of Older People: Mixed Methods Study",
journal="JMIR Aging",
year="2023",
month="Sep",
day="21",
volume="6",
pages="e41185",
keywords="informal carers",
keywords="information technology",
keywords="internet",
keywords="information needs",
keywords="mixed methods evaluation",
keywords="Reach, Effectiveness, Adoption, Implementation, and Maintenance",
keywords="RE-AIM",
keywords="mobile phone",
abstract="Background: Informal carers play a major role in supporting relatives and friends who are sick, disabled, or frail. Access to information, guidance, and support that are relevant to the lives and circumstances of carers is critical to carers feeling supported in their role. When unmet, this need is known to adversely affect carer resilience and well-being. To address this problem, Care Companion was co-designed with current and former carers and stakeholders as a free-to-use, web-based resource to provide access to a broad range of tailored information, including links to local and national resources. Objective: This study aimed to investigate the real-world uptake and use of Care Companion in 1 region of England (with known carer population of approximately 100,000), with local health, community, and social care teams being asked to actively promote its use. Methods: The study had a convergent parallel, mixed methods design and drew on the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework. Data included metrics from carers' use of Care Companion, surveys completed by users recruited through general practice, and interviews with carers and health and social care providers regarding their views about Care Companion and their response to it. Quantitative data were analyzed using descriptive statistics. Interview data were analyzed thematically and synthesized to create overarching themes. The qualitative findings were used for in-depth exploration and interpretation of quantitative results. Results: Despite awareness-raising activities by relevant health, social care, and community organizations, there was limited uptake with only 556 carers (0.87\% of the known carer population of 100,000) registering to use Care Companion in total, with median of 2 (mean 7.2; mode 2) visits per registered user. Interviews with carers (n=29) and stakeholders (n=12) identified 7 key themes that influenced registration, use, and perceived value: stakeholders' signposting of carers to Care Companion, expectations about Care Companion, activity levels and conflicting priorities, experience of using Care Companion, relevance to personal circumstances, social isolation and networks, and experience with digital technology. Although many interviewed carers felt that it was potentially useful, few considered it as being of direct relevance to their own circumstances. For some, concerns about social isolation and lack of hands-on support were more pressing issues than the need for information. Conclusions: The gap between the enthusiastic views expressed by carers during Care Companion's co-design and the subsequent low level of uptake and user experience observed in this evaluation suggests that the co-design process may have lacked a sufficiently diverse set of viewpoints. Numerous factors were identified as contributing to Care Companion's level of use, some of which might have been anticipated during its co-design. More emphasis on the development and implementation, including continuing co-design support after deployment, may have supported increased use. ",
doi="10.2196/41185",
url="https://aging.jmir.org/2023/1/e41185",
url="http://www.ncbi.nlm.nih.gov/pubmed/37733406"
}


@Article{info:doi/10.2196/46988,
author="Seng, Benjamin Jun Jie
and Gwee, Ryan Meng Ferng
and Yong, Amanda Mei Hui
and Kwan, Heng Yu
and Thumboo, Julian
and Low, Leng Lian",
title="Role of Caregivers in Remote Management of Patients With Type 2 Diabetes Mellitus: Systematic Review of Literature",
journal="J Med Internet Res",
year="2023",
month="Sep",
day="11",
volume="25",
pages="e46988",
keywords="care",
keywords="caregiver",
keywords="diabetes",
keywords="glucose monitoring",
keywords="glucose",
keywords="medication",
keywords="mHealth",
keywords="monitoring",
keywords="patient care",
keywords="quality of life",
keywords="remote management",
keywords="remote monitoring",
keywords="systematic review",
keywords="telehealth",
keywords="telemedicine",
keywords="type 2 diabetes mellitus",
keywords="utilization",
abstract="Background: With the growing use of remote monitoring technologies in the management of patients with type 2 diabetes mellitus (T2DM), caregivers are becoming important resources that can be tapped into to improve patient care. Objective: This review aims to summarize the role of caregivers in the remote monitoring of patients with T2DM. Methods: We performed a systematic review in MEDLINE, Embase, Scopus, PsycINFO, and Web of Science up to 2022. Studies that evaluated the role of caregivers in remote management of adult patients with T2DM were included. Outcomes such as diabetes control, adherence to medication, quality of life, frequency of home glucose monitoring, and health care use were evaluated. Results: Of the 1198 identified citations, 11 articles were included. The majority of studies were conducted in North America (7/11, 64\%) and South America (2/11, 18\%). The main types of caregivers studied were family or friends (10/11, 91\%), while the most common remote monitoring modalities evaluated were interactive voice response (5/11, 45\%) and phone consultations (4/11, 36\%). With regard to diabetes control, 3 of 6 studies showed improvement in diabetes-related laboratory parameters. A total of 2 studies showed improvements in patients' medication adherence rates and frequency of home glucose monitoring. Studies that evaluated patients' quality of life showed mixed evidence. In 1 study, increased hospitalization rates were noted in the intervention group. Conclusions: Caregivers may play a role in improving clinical outcomes among patients with T2DM under remote monitoring. Studies on mobile health technologies are lacking to understand their impact on Asian populations and long-term patient outcomes. ",
doi="10.2196/46988",
url="https://www.jmir.org/2023/1/e46988",
url="http://www.ncbi.nlm.nih.gov/pubmed/37695663"
}


@Article{info:doi/10.2196/46081,
author="Rauzi, R. Michelle
and Mealer, L. Meredith
and Abbate, M. Lauren
and Stevens-Lapsley, E. Jennifer
and Nearing, A. Kathryn",
title="Older Veterans' Experiences of a Multicomponent Telehealth Program: Qualitative Program Evaluation Study",
journal="JMIR Form Res",
year="2023",
month="Sep",
day="8",
volume="7",
pages="e46081",
keywords="telehealth",
keywords="multimorbidity",
keywords="older adults",
keywords="veteran health",
keywords="physical therapy",
abstract="Background: There are 8.8 million American veterans aged >65 years. Older veterans often have multiple health conditions that increase their risk of social isolation and loneliness, disability, adverse health events (eg, hospitalization and death), mental illness, and heavy health care use. This population also exhibits low levels of physical function and daily physical activity, which are factors that can negatively influence health. Importantly, these are modifiable risk factors that are amenable to physical therapy intervention. We used a working model based on the dynamic biopsychosocial framework and social cognitive theory to conceptualize the multifactorial needs of older veterans with multiple health conditions and develop a novel, 4-component telehealth program to address their complex needs. Objective: This study aims to describe veterans' experiences of a multicomponent telehealth program and identify opportunities for quality and process improvement. We conducted qualitative interviews with telehealth program participants to collect their feedback on this novel program; explore their experience of program components; and document perceived outcomes and the impact on their daily life, relationships, and quality of life. Methods: As part of a multimethod program evaluation, semistructured interviews were conducted with key informants who completed ?8 weeks of the 12-week multicomponent telehealth program for veterans aged ?50 years with at least 3 medical comorbidities. Interviews were audio recorded and transcribed. Data were analyzed by a team of 2 coders using a directed content analysis approach and Dedoose software was used to assist with data analysis. Results: Of the 21 individuals enrolled in the program, 15 (71\%) met the inclusion criteria for interviews. All 15 individuals completed 1-hour interviews. A total of 6 main conceptual domains were identified: technology, social networks, therapeutic relationship, patient attributes, access, and feasibility. Themes associated with each domain detail participant experiences of the telehealth program. Key informants also provided feedback related to different components of the program, leading to adaptations for the biobehavioral intervention, group sessions (transition from individual to group sessions and group session dynamics), and technology supports. Conclusions: Findings from this program evaluation identified quality and process improvements, which were made before rigorously testing the intervention in a larger population through a randomized controlled trial. The findings may inform adaptations of similar programs in different contexts. Further research is needed to develop a deeper understanding of how program components influence social health and longer-term behavior change. ",
doi="10.2196/46081",
url="https://formative.jmir.org/2023/1/e46081",
url="http://www.ncbi.nlm.nih.gov/pubmed/37682595"
}


@Article{info:doi/10.2196/49752,
author="Xu, Ling
and Fields, L. Noelle
and Daniel, M. Kathryn
and Cipher, J. Daisha
and Troutman, A. Brooke",
title="Reminiscence and Digital Storytelling to Improve the Social and Emotional Well-Being of Older Adults With Alzheimer's Disease and Related Dementias: Protocol for a Mixed Methods Study Design and a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2023",
month="Sep",
day="7",
volume="12",
pages="e49752",
keywords="Alzheimer's disease and related dementias",
keywords="ADRD",
keywords="digital storytelling",
keywords="DST",
keywords="intergenerational reminiscence",
keywords="older adult",
keywords="young adult",
keywords="randomized controlled trial",
abstract="Background: Increasing attention is being given to the growing concerns about social isolation, loneliness, and compromised emotional well-being experienced by young adults and older individuals affected by Alzheimer disease and related dementias (ADRD). Studies suggest that reminiscence strategies combined with an intergenerational approach may yield significant social and mental health benefits for participants. Experts also recommended the production of a digital life story book as part of reminiscence. Reminiscence is typically implemented by trained professionals (eg, social workers and nurses); however, there has been growing interest in using trained volunteers owing to staffing shortages and the costs associated with reminiscence programs. Objective: The proposed study will develop and test how reminiscence offered by trained young adult volunteers using a digital storytelling platform may help older adults with ADRD to improve their social and emotional well-being. Methods: The proposed project will conduct a randomized controlled trial to assess the effects of the intervention. The older and young adult participants will be randomly assigned to the intervention (reminiscence based) or control groups and then be randomly matched within each group. Data will be collected at baseline before the intervention, in the middle of the intervention, at end of the intervention, and at 3 months after the intervention. An explanatory sequential mixed methods design will be used to take advantage of the strengths of both quantitative and qualitative methods. The quantitative data from surveys will be entered into SPSS and analyzed using covariate-adjusted linear mixed models for repeated measures to compare the intervention and control groups over time on the major outcomes of participants. Conventional content analysis of qualitative interviews will be conducted using data analysis software. Results: The project was modified to a telephone-based intervention owing to the COVID-19 pandemic. Data collection started in 2020 and ended in 2022. In total, 103 dyads were matched at the beginning of the intervention. Of the 103 dyads, 90 (87.4\%) dyads completed the midtest survey and 64 (62.1\%) dyads completed the whole intervention and the posttest survey. Although we are still cleaning and finalizing data analyses, the preliminary results from both quantitative and qualitative data showed promising results of this intergenerational reminiscence approach that benefits both the older adults who have cognitive impairments and the young adult participants. Conclusions: Intergenerational reminiscence provided by young adult college student offers promising benefits for both the younger and older generations. Future studies may consider scaling up this pilot into a trackable, replicable model that includes more participants with diverse background (eg, public vs private college students and older adults from other agencies) to test the effectiveness of this intervention for older adults with ADRD. Trial Registration: ClinicalTrials.gov NCT05984732; https://classic.clinicaltrials.gov/ct2/show/NCT05984732 International Registered Report Identifier (IRRID): DERR1-10.2196/49752 ",
doi="10.2196/49752",
url="https://www.researchprotocols.org/2023/1/e49752",
url="http://www.ncbi.nlm.nih.gov/pubmed/37676706"
}


@Article{info:doi/10.2196/46269,
author="Kwok, Ian
and Lattie, Gardiner Emily
and Yang, Dershung
and Summers, Amanda
and Grote, Veronika
and Cotten, Paul
and Moskowitz, Tedlie Judith",
title="Acceptability and Feasibility of a Socially Enhanced, Self-Guided, Positive Emotion Regulation Intervention for Caregivers of Individuals With Dementia: Pilot Intervention Study",
journal="JMIR Aging",
year="2023",
month="Sep",
day="6",
volume="6",
pages="e46269",
keywords="dementia",
keywords="caregiving",
keywords="eHealth",
keywords="digital interventions",
keywords="positive emotion",
keywords="stress",
keywords="coping",
abstract="Background: The responsibilities of being a primary caregiver for a loved one with dementia can produce significant stress for the caregiver, leading to deleterious outcomes for the caregiver's physical and psychological health. Hence, researchers are developing eHealth interventions to provide support for caregivers. Members of our research team previously developed and tested a positive emotion regulation intervention that we delivered through videoconferencing, in which caregiver participants would meet one-on-one with a trained facilitator. Although proven effective, such delivery methods have limited scalability because they require significant resources in terms of cost and direct contact hours. Objective: This study aimed to conduct a pilot test of a socially enhanced, self-guided version of the positive emotion regulation intervention, Social Augmentation of Self-Guided Electronic Delivery of the Life Enhancing Activities for Family Caregivers (SAGE LEAF). Studies have shown that social presence or the perception of others in a virtual space is associated with enhanced learning and user satisfaction. Hence, the intervention leverages various social features (eg, discussion boards, podcasts, videos, user profiles, and social notifications) to foster a sense of social presence among participants and study team members. Methods: Usability, usefulness, feasibility, and acceptability data were collected from a pilot test in which participants (N=15) were given full access to the SAGE LEAF intervention over 6 weeks and completed preintervention and postintervention assessments (10/15, 67\%). Preliminary outcome measures were also collected, with an understanding that no conclusions about efficacy could be made, because our pilot study did not have a control group and was not sufficiently powered. Results: The results suggest that SAGE LEAF is feasible, with participants viewing an average of 72\% (SD 42\%) of the total available intervention web pages. In addition, acceptability was found to be good, as demonstrated by participants' willingness to recommend the SAGE LEAF program to a friend or other caregiver. Applying Pearson correlational analyses, we found moderate, positive correlation between social presence scores and participants' willingness to recommend the program to others (r9=0.672; P=.03). We also found positive correlation between social presence scores and participants' perceptions about the overall usefulness of the intervention (r9=0.773; P=.009). This suggests that participants' sense of social presence may be important for the feasibility and acceptability of the program. Conclusions: In this pilot study, the SAGE LEAF intervention demonstrates potential for broad dissemination for dementia caregivers. We aim to incorporate participant feedback about how the social features may be improved in future iterations to enhance usability and to further bolster a sense of social connection among participants and study staff members. Next steps include partnering with dementia clinics and other caregiver-serving organizations across the United States to conduct a randomized controlled trial to evaluate the effectiveness of the intervention. ",
doi="10.2196/46269",
url="https://aging.jmir.org/2023/1/e46269",
url="http://www.ncbi.nlm.nih.gov/pubmed/37672311"
}


@Article{info:doi/10.2196/47577,
author="Fan, Qiping
and DuBose, Logan
and Ory, G. Marcia
and Lee, Shinduk
and Hoang, Minh-Nguyet
and Vennatt, Jeswin
and Kew, Lin Chung
and Doyle, David
and Falohun, Tokunbo",
title="Financial, Legal, and Functional Challenges of Providing Care for People Living With Dementia and Needs for a Digital Platform: Interview Study Among Family Caregivers",
journal="JMIR Aging",
year="2023",
month="Sep",
day="5",
volume="6",
pages="e47577",
keywords="family caregiver",
keywords="Alzheimer disease",
keywords="dementia",
keywords="caregiving challenges",
keywords="digital health",
keywords="community-based participatory research",
keywords="mobile phone",
abstract="Background: Alzheimer disease and Alzheimer disease--related dementia represent complex neuropathologies directly challenging individuals, their families, and communities in the United States. To support persons living with dementia, family or informal caregivers often encounter complex financial, psychological, and physical challenges. A widely used solution such as a consolidated web-based assistance or guidance platform is missing, compounding care challenges. Objective: In preparation for designing an internet-based artificial intelligence--driven digital resource platform, a qualitative interview study was conducted to characterize the challenges and needs of family caregivers in the United States. Methods: A semistructured interview topic guide in English was developed by engaging community partners and research partnerships. Family caregiver participants were purposefully recruited via various means, such as word of mouth, local dementia community service providers, digital recruitment emails, flyers, and social media. Interested individuals were first invited to complete an eligibility screening survey, and eligible individuals were then contacted to arrange a web-based in-depth interview via Zoom (Zoom Video Communications) from January 1, 2022, to May 31, 2022. A follow-up survey was administered in May 2022 to provide an overview of the participants' demographics, socioeconomic characteristics, and caregiving information. Thematic analysis in a framework approach was used to identify and organize themes and the study findings. Results: Following the prescreening of 150 eligible respondents, 20\% (30/150) individuals completed both the interviews and follow-up survey, allowing for an in-depth look into the challenges, experiences, and expectations of primary caregivers of people living with dementia. Most participants (20/30, 67\%) were primary caregivers of persons with dementia, and 93\% (28/30) had provided care for at least a year. Most participants were aged >50 years (25/30, 83\%), female (23/30, 77\%), White (25/30, 83\%), and non-Hispanic (27/30, 90\%) and held a bachelor's or graduate degree (22/30, 73\%). Collectively, all participants acknowledged challenges in caring for people living with dementia. Thematic analyses elicited the challenges of caregiving related to functional care needs and financial and legal challenges. In addition, participants identified the need for an integrative digital platform where information could be supplied to foster education, share resources, and provide community support, enabling family caregivers to improve the quality of care and reducing caregiver burden. Conclusions: This study emphasized the difficulties associated with the family caregiver role and the expectations and potential for a supportive web-based platform to mitigate current challenges within the caregiving role. ",
doi="10.2196/47577",
url="https://aging.jmir.org/2023/1/e47577",
url="http://www.ncbi.nlm.nih.gov/pubmed/37526513"
}


@Article{info:doi/10.2196/45859,
author="McCrae, S. Christina
and Curtis, F. Ashley
and Stearns, A. Melanie
and Nair, Neetu
and Golzy, Mojgan
and Shenker, I. Joel
and Beversdorf, Q. David
and Cottle, Amelia
and Rowe, A. Meredeth",
title="Development and Initial Evaluation of Web-Based Cognitive Behavioral Therapy for Insomnia in Rural Family Caregivers of People With Dementia (NiteCAPP): Mixed Methods Study",
journal="JMIR Aging",
year="2023",
month="Aug",
day="24",
volume="6",
pages="e45859",
keywords="arousal",
keywords="caregivers",
keywords="cognitive behavioral therapy",
keywords="CBT: cognitive behavioral therapy for insomnia",
keywords="CBT-I",
keywords="dementia",
keywords="insomnia",
keywords="internet",
abstract="Background: Informal caregivers of people with dementia frequently experience chronic insomnia, contributing to stress and poor health outcomes. Rural caregivers are particularly vulnerable but have limited access to cognitive behavioral therapy for insomnia (CBT-I), a recommended frontline treatment for chronic insomnia. Web-based delivery promises to improve insomnia, particularly for rural caregivers who have limited access to traditional in-person treatments. Our team translated an efficacious 4-session standard CBT-I content protocol into digital format to create NiteCAPP. Objective: This study aimed to (1) adapt NiteCAPP for dementia caregivers to create NiteCAPP CARES, a tailored digital format with standard CBT-I content plus caregiver-focused modifications; (2) conduct usability testing and evaluate acceptability of NiteCAPP CARES' content and features; and (3) pilot-test the adapted intervention to evaluate feasibility and preliminary effects on sleep and related health outcomes. Methods: We followed Medical Research Council recommendations for evaluating complex medical interventions to explore user needs and adapt and validate content using a stepwise approach: (1) a rural dementia caregiver (n=5) and primary care provider (n=5) advisory panel gave feedback that was used to adapt NiteCAPP; (2) caregiver (n=5) and primary care provider (n=7) focus groups reviewed the newly adapted NiteCAPP CARES and provided feedback that guided further adaptations; and (3) NiteCAPP CARES was pilot-tested in caregivers (n=5) for feasibility and to establish preliminary effects. Self-report usability measures were collected following intervention. Before and after treatment, 14 daily electronic sleep diaries and questionnaires were collected to evaluate arousal, health, mood, burden, subjective cognition, and interpersonal processes. Results: The stepped approach provided user and expert feedback on satisfaction, usefulness, and content, resulting in a new digital CBT-I tailored for rural dementia caregivers: NiteCAPP CARES. The advisory panel recommended streamlining content, eliminating jargon, and including caregiver-focused content. Focus groups gave NiteCAPP CARES high usefulness ratings (mean score 4.4, SD 0.79, scored from 1=least to 5=most favorable; score range 4.2-4.8). Multiple features were evaluated positively, including the intervention's comprehensive and engaging information, caregiver focus, good layout, easy-to-access intervention material, and easy-to-understand sleep graphs. Suggestions for improvement included the provision of day and night viewing options, collapsible text, font size options, tabbed access to videos, and a glossary of terms. Pilot-test users rated usefulness (mean score 4.3, SD 0.83; range 4.1-4.5) and satisfaction (mean score 8.4, SD 1.41, scored from 1=least to 10=most satisfied; range 7.4-9.0) highly. Preliminary effects on caregiver sleep, arousal, health, mood, burden, cognition, and interpersonal processes (all P<.05) were promising. Conclusions: Adaptations made to standard digital CBT-I created a feasible, tailored digital intervention for rural dementia caregivers. Important next steps include further examination of feasibility and efficacy in a randomized controlled trial with an active control condition, a multisite effectiveness trial, and eventual broad dissemination. Trial Registration: ClinicalTrials.gov NCT04632628; https://clinicaltrials.gov/ct2/show/NCT04632628 ",
doi="10.2196/45859",
url="https://aging.jmir.org/2023/1/e45859",
url="http://www.ncbi.nlm.nih.gov/pubmed/37616032"
}


@Article{info:doi/10.2196/42561,
author="Meyer, Kylie
and Gonzalez, Alexander
and Benton, Donna",
title="Qualitative Evaluation of Family Caregivers' Experiences Participating in Knowledge and Interpersonal Skills to Develop Exemplary Relationships (KINDER): Web-Based Intervention to Improve Relationship Quality",
journal="JMIR Form Res",
year="2023",
month="Aug",
day="22",
volume="7",
pages="e42561",
keywords="aging",
keywords="Alzheimer's",
keywords="Alzheimer",
keywords="caregiver",
keywords="caregiving",
keywords="dementia: digital health",
keywords="digital intervention",
keywords="family care",
keywords="informal care",
keywords="intervention",
keywords="older adult",
keywords="quality of care",
abstract="Background: The onset of Alzheimer disease and related dementias (AD/ADRD) can alter relationships between family caregivers and persons living with AD/ADRD, such as through the occurrence of distressful behavioral and psychological symptoms of dementia. Poorly perceived relationship quality by caregivers contributes to negative outcomes for both care partners, such as low-quality caregiving and potential mistreatment of older adults. Knowledge and Interpersonal Skills to Develop Exemplary Relationships (KINDER) is a new, web-based, asynchronous psychoeducational intervention with content informed by focus groups with family caregivers. The program was developed to prevent low-quality caregiving and potential mistreatment of older adults by focusing on building healthy caregiving relationships. Objective: The purpose of this study is to describe caregivers' experiences participating in KINDER to understand intervention acceptability. Of particular interest was learning how comfortable caregivers were viewing content addressing potential mistreatment, as well as whether asynchronous delivery created any barriers to participating in the intervention. Findings will inform future program refinements before efficacy testing. Methods: Although 23 caregivers enrolled in the KINDER parent study, only 7 of them completed the 8-week intervention. In-depth, semistructured qualitative interviews were conducted with all participants who completed the program to understand their experiences while attending KINDER and to decipher barriers to participation. We also asked participants about which program elements were most valuable and which were least valuable to them, as well as how the program could be improved. Interview transcripts were analyzed by 2 coders using thematic analysis. Results: Our findings indicate that caregivers were overall satisfied with KINDER's focus and content. Participants particularly liked how KINDER materials felt authentic and relevant to supporting healthy care relationships (Theme 1). The program's multiple components were found to be valuable, especially story-based video vignettes and readings (Theme 2). Most caregivers were comfortable viewing depictions of mistreatment and understood the importance of this content (Theme 3). Notably, while caregivers appreciated the convenience of participating in an asynchronous web-based intervention, several expressed a desire for more opportunities to speak with other caregivers (Theme 4). Technology challenges, such as a lack of clarity about automated intervention activities, deterred completion. Conclusions: Findings from this study suggest an asynchronous web-based intervention covering sensitive topics such as mistreatment is acceptable for at least some AD/ADRD caregivers. Caregivers' comments that materials felt authentic may suggest that the integration of caregiver voices before intervention development enhanced the relevance of content. To make KINDER easier to deliver and participate in, the investigators plan to reduce the use of automation and integrate more group-based programming, as recommended by participants. Further, given the higher-than-expected dropout rate, in future studies, the investigators will collect data to determine the reasons for participants not completing study activities. ",
doi="10.2196/42561",
url="https://formative.jmir.org/2023/1/e42561",
url="http://www.ncbi.nlm.nih.gov/pubmed/37606980"
}


@Article{info:doi/10.2196/44125,
author="Mahmoudi Asl, Aysan
and Kouters, Suzanne
and Castro-Gonz{\'a}lez, {\'A}lvaro
and Van der Roest, Henri{\"e}tte
and Franco Martin, Manuel
and Dr{\"o}es, Rose-Marie",
title="Potential Facilitators of and Barriers to Implementing the MINI Robot in Community-Based Meeting Centers for People With Dementia and Their Carers in the Netherlands and Spain: Explorative Qualitative Study",
journal="J Med Internet Res",
year="2023",
month="Aug",
day="2",
volume="25",
pages="e44125",
keywords="dementia",
keywords="meeting centers",
keywords="mild cognitive impairment",
keywords="social robots",
abstract="Background: Social robots, as a form of digital health technologies, are used to support emotional, cognitive, and physical care and have shown promising outcomes in enhancing social well-being in people with dementia (PwD) by boosting emotions, social interactions, and activity participation. Objective: The goal is to investigate the attitude of stakeholders and potential facilitators and the barriers to implementing the social robot MINI in community-based meeting centers (MCs) for PwD and carers in the Netherlands and Spain. Methods: Based on the British Medical Research Council guidance for process evaluation of the implementation of complex interventions and the model for tracing the facilitators of and barriers to the adaptive implementation of innovations in dementia care, an explorative qualitative study was conducted. Following the introduction of the MINI robot, 11 stakeholders were interviewed in 3 MCs in the Netherlands and 1 in Spain, as well as stakeholders in health and welfare organizations in both countries. In addition, 12 adults with dementia participated in focus groups. The data were thematically analyzed and narratively described. Results: Overall, the stakeholder opinion and interest in the MINI robot were positive. The most important (expected) facilitating factors mentioned by stakeholders appeared to be human resources, funding, the impact of the MINI robot on the users and programs of the MCs, characteristics of the innovation, and collaboration with other care and welfare organizations. However, the (expected) barriers mentioned concerned the physical context and functionalities of the MINI robot, the user context, and MC activity policies. Conclusions: The findings will inform professional stakeholders, such as MC directors and managers, as well as care and welfare organizations, on the practicality of using the MINI robot in MCs. Furthermore, our research will aid MINI robot developers in tailoring its features to PwD's preferences and demands and MC policies, which will contribute to the MINI robot's effective adoption and deployment. ",
doi="10.2196/44125",
url="https://www.jmir.org/2023/1/e44125",
url="http://www.ncbi.nlm.nih.gov/pubmed/37531190"
}


@Article{info:doi/10.2196/46935,
author="Monnet, Fanny
and Dupont, Charl{\`e}ss
and Smets, Tinne
and De Vleminck, Aline
and Van Audenhove, Chantal
and Van den Block, Lieve
and Pivodic, Lara",
title="Advance Care Planning Website for People With Dementia and Their Family Caregivers: Protocol for a Development and Usability Study",
journal="JMIR Res Protoc",
year="2023",
month="Jul",
day="26",
volume="12",
pages="e46935",
keywords="advance care planning",
keywords="people with dementia",
keywords="technology",
keywords="development",
keywords="usability testing",
keywords="dementia",
keywords="caregiver",
keywords="web-based tools",
keywords="digital health",
keywords="user-centered approach",
abstract="Background: Web-based tools for people with dementia and their family caregivers have considerably increased over the years and offer promising solutions to several unmet needs such as supporting self-care in daily life, facilitating treatment delivery, or ensuring their ability to communicate. The use of web-based tools in the field of advance care planning (ACP) for people with dementia and their family caregivers has yet to be explored and requires careful consideration, given the sensitive topic and the specific needs of people with dementia and their families. Objective: This paper reports the protocol for a study aiming to develop and simultaneously test the usability of an ACP website designed for, and with, people with dementia and their families. Methods: The development of the website is based on a process map for the development of web-based decision support interventions and on the Medical Research Council framework for complex intervention development and evaluation. Additionally, we apply a user-centered approach in combination with patient and public involvement (PPI) throughout the development process. We describe our iterative development approach to the website. Participants and a PPI group give feedback on 4 prototypes of the ACP website. For each iteration, we aim to include 12 participants (3 people with dementia, 3 family caregivers, and 3 dyads) in usability testing. In the first 3 iterations, usability testing includes (1) a think-aloud exercise, (2) researcher observations, and (3) the System Usability Scale questionnaire. The last iteration of usability testing is composed of a semistructured interview assessing the layout, content, face validity, and readability of the website. Qualitative data from the think-aloud exercises and interviews are analyzed using thematic analysis. Mean scores are calculated for the System Usability Scale questionnaire. Results: This study received approval from the Ethical Review Board of Brussels University Hospital of the Vrije Universiteit Brussel. Recruitment began in October 2021. The target date for paper submission of the results of the development and usability testing will be in 2023. Conclusions: The methods in this protocol describe a feasible and inclusive approach to the development of an ACP website together with people with dementia, their family caregivers, and other stakeholders. We provide a clear overview of how to combine PPI input and user-centered development methods, leading to a transparent and reliable development process. This protocol might stimulate the active participation of people with dementia, their caregivers, and regional stakeholders in future studies on web-based technologies. The results of this study will be used to refine the design and create a relevant and user-friendly ACP website that is ready to be tested in a larger evaluation study. International Registered Report Identifier (IRRID): DERR1-10.2196/46935 ",
doi="10.2196/46935",
url="https://www.researchprotocols.org/2023/1/e46935",
url="http://www.ncbi.nlm.nih.gov/pubmed/37494084"
}


@Article{info:doi/10.2196/49679,
author="Fields, L. Noelle
and Xu, Ling
and Williams, C. Ishan
and Gaugler, E. Joseph
and Cipher, J. Daisha",
title="The Senior Companion Program Plus for African American Caregivers of Persons With Alzheimer Disease and Related Dementias: Protocol for a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2023",
month="Jul",
day="24",
volume="12",
pages="e49679",
keywords="Alzheimer disease",
keywords="dementia",
keywords="lay provider",
keywords="senior companion",
keywords="volunteer",
keywords="intervention",
keywords="culturally informed",
keywords="African American",
keywords="family caregivers",
abstract="Background: Alzheimer disease and related dementias (ADRD) pose significant challenges as chronic health conditions in the United States. Additionally, there are notable disparities in the diagnosis and prevalence of ADRD among diverse populations. Specifically, African American populations have a higher risk of developing late-onset ADRD than White people, and missed diagnoses of ADRD are more common among older African American populations than older White populations. These disparities also impact African American ADRD family caregivers. Objective: The overall goal of this project is to develop a culturally informed, lay provider psychoeducational intervention named Senior Companion Program Plus (SCP Plus), which is specifically designed for African American ADRD caregivers and is potentially accessible, affordable, and sustainable. Methods: In the proposed explanatory sequential mixed methods study, a randomized controlled trial will be used that includes 114 African American family caregivers of a relative with ADRD who will participate in the 3-month SCP Plus program. Results: The study was funded on September 15, 2018, by the National Institutes of Health (1R15AG058182-01A1). Data collection began on May 16, 2019, but due to COVID-19 restrictions, ended 12 months into the planned 27-month recruitment period on March 31, 2023. The study was completed in June 30, 2023, and currently the results are being analyzed. Conclusions: The SCP Plus offers promise as an intervention that utilizes an existing platform for the delivery of a lay provider intervention and offers a novel approach for addressing gaps in accessible, community-based support for caregivers of people with ADRD. Trial Registration: ClinicalTrials.gov NCT03602391; https://classic.clinicaltrials.gov/ct2/show/NCT03602391 International Registered Report Identifier (IRRID): RR1-10.2196/49679 ",
doi="10.2196/49679",
url="https://www.researchprotocols.org/2023/1/e49679",
url="http://www.ncbi.nlm.nih.gov/pubmed/37486759"
}


@Article{info:doi/10.2196/47916,
author="Judica, Elda
and Tropea, Peppino
and Bou{\c{c}}a-Machado, Raquel
and Mar{\'i}n, Mayca
and Calarota, Elisa
and Cozma, Liviu
and Badea, Raluca
and Ahmed, Mona
and Brach, Michael
and Ferreira, J. Joaquim
and Corbo, Massimo",
title="Personalized Integrated Care Promoting Quality of Life for Older People: Protocol for a Multicenter Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2023",
month="Jul",
day="24",
volume="12",
pages="e47916",
keywords="Parkinson disease",
keywords="dementia",
keywords="neurodegenerative",
keywords="chronic diseases",
keywords="health care technologies",
keywords="integrated care",
abstract="Background: Alzheimer disease (AD) and Parkinson disease (PD) are the 2 most common neurodegenerative diseases affecting millions of people worldwide. The Personalized Integrated Care Promoting Quality of Life for Older People (PC4L) project proposes an integrated, scalable, and interactive care ecosystem that can be easily adapted to the needs of several neurodegenerative and chronic diseases, care institutions, and end user requirements. Objective: The study protocol developed within the framework of the PC4L project aims to iteratively test the integrated platform and its modules, and focuses primarily on assessing the impact of the proposed solution (ie, the PC4L platform) on patients' quality of life, as well as its usability and feasibility on a large-scale sample size in 3 different scenarios (home, neurorehabilitation, and day care centers). Methods: A prospective multicenter clinical study is conducted in 5 European countries (Germany, Italy, Portugal, Romania, and Spain) at 6 different pilot centers, for 3 months, in patients with PD, Parkinsonism, AD, and other dementias (ODs). Patients were randomized in a ratio of 1:1 to the intervention group (use of the PC4L system) or the control group (no intervention). The PC4L system consists mainly of a wristband for monitoring parameters such as steps and levels of physical activity, and the PC4L app, which includes different engaging functionalities. Both groups are assessed through baseline and end-of-study clinical evaluations, including assessment of quality of life through the EQ-5D-3L scale. Results: The study protocol is part of a project approved and funded by the European Commission Horizon 2020 (grant agreement number 875221). The ethics committees of all involved centers reviewed and approved the study protocol. The study began with the recruitment phase in September 2022, and enrollment ended in February 2023. Recruitment is now closed (April 2023). The results of this study are expected to be published in summer 2023. A total of 558 patients, 279 per study group, were recruited. The results will allow to clarify the impact of PC4L on quality of life, will assess the empowerment of patients and the medical resources use, as well as the usability of the final version of the PC4L system. It will also provide information on the support of the system as a tool to facilitate the decision-making process. Conclusions: The PC4L project intends to test a technology-based, integrated, scalable, and interactive care platform on patients with neurodegenerative diseases and proposes a good coordinated care model between all involved actors. Future developments of the PC4L solution may involve caregivers and socio-health professionals in the decision-making process in order to facilitate efficient communication between all stakeholders and ensure reliable and protected access to data within Europe. Trial Registration: ClinicalTrials.gov NCT05538455; https://clinicaltrials.gov/study/NCT05538455 International Registered Report Identifier (IRRID): DERR1-10.2196/47916 ",
doi="10.2196/47916",
url="https://www.researchprotocols.org/2023/1/e47916",
url="http://www.ncbi.nlm.nih.gov/pubmed/37486732"
}


@Article{info:doi/10.2196/44268,
author="Silaule, Olindah
and Adams, Fasloen
and Nkosi, Gloria Nokuthula",
title="Strategies for Alleviating the Burden Experienced by Informal Caregivers of Persons With Severe Mental Disorders in Transitional Countries: Protocol for a Scoping Review",
journal="JMIR Res Protoc",
year="2023",
month="Jul",
day="24",
volume="12",
pages="e44268",
keywords="burden",
keywords="caregiver burden",
keywords="caregiver care",
keywords="caregiver intervention",
keywords="caregiver stress",
keywords="caregiver",
keywords="developing country",
keywords="guidelines",
keywords="implementation strategy",
keywords="informal carers",
keywords="mental disorder",
keywords="mental well-being",
keywords="review method",
keywords="rural",
keywords="scoping review",
keywords="support strategies",
abstract="Background: Caregiver burden is highly prevalent among the informal caregivers of persons with severe mental disorders (SMDs). As such, strategies to support informal caregivers are necessary to enable them to cope with their caregiving role. Currently, there is limited evidence on the extent of existing strategies for supporting informal caregivers of persons with SMDs in transitional countries. Objective: This study presents a scoping review protocol to identify and describe the extent and type of evidence on the existing strategies for alleviating caregiver burden among informal caregivers of persons with SMDs in transitional countries. Methods: This scoping review will be conducted using the Joanna Briggs Institute's methodology for scoping reviews. The participants, concept, and context framework will be used to select relevant studies. This review will include studies on strategies for addressing caregiver burden among informal caregivers, with a specific focus on studies outlining caregiver interventions, caregiver support, and policies with strategies for supporting informal caregivers of persons with SMDs. Relevant studies conducted in transitional countries will be considered for inclusion. There will be no restrictions on publication type or design. Published literature will be accessed by searching electronic databases, including PubMed, MEDLINE, CINAHL, and PsycINFO; ProQuest will be used to access gray literature. Additionally, the reference lists of key studies will be reviewed to identify studies for inclusion. The search will be restricted to articles published between 2011 and 2021. Two reviewers will work independently to screen all abstracts and full texts for inclusion in line with the set inclusion criteria. Extracted data will be categorized and described using descriptive qualitative content analysis. Results: This protocol will guide a scoping review to identify and describe the extent and type of evidence on the existing strategies for alleviating caregiver burden among informal caregivers of persons with SMDs in transitional countries. The main results of this scoping review will synthesize evidence from peer-reviewed and gray literature sources outlining various services and interventions for supporting informal caregivers of people with SMDs in transitional countries. In addition, existing gaps in the literature will be identified to inform future studies. Conclusions: The increase in caregiver burden among informal caregivers in mental health warrants the development and implementation of strategies for alleviating the burden. This scoping review aims to increase awareness on the various services and intervention strategies for alleviating burden among informal caregivers in transitional countries. International Registered Report Identifier (IRRID): RR1-10.2196/44268 ",
doi="10.2196/44268",
url="https://www.researchprotocols.org/2023/1/e44268",
url="http://www.ncbi.nlm.nih.gov/pubmed/37486756"
}


@Article{info:doi/10.2196/47650,
author="Premanandan, Shweta
and Ahmad, Awais
and Cajander, {\AA}sa
and {\AA}gerfalk, P{\"a}r
and van Gemert-Pijnen, Lisette",
title="Designing and Evaluating IT Applications for Informal Caregivers: Protocol for a Scoping Review",
journal="JMIR Res Protoc",
year="2023",
month="Jul",
day="6",
volume="12",
pages="e47650",
keywords="burnout",
keywords="caregiver",
keywords="caregiving activity",
keywords="design guidelines",
keywords="design",
keywords="development",
keywords="digital health",
keywords="digital resources",
keywords="effectiveness",
keywords="evaluation",
keywords="health care services",
keywords="implementation",
keywords="informal caregiver",
keywords="IT applications",
keywords="long term care",
keywords="mobile app",
keywords="smartphone",
keywords="usability",
keywords="work-life balance",
abstract="Background: A growing number of informal caregivers in many countries are important for effective functioning of health care in our society. Hence, they must receive the required support and services to continue providing care. IT applications can be used to support informal caregivers in their caregiving activities. However, evidence-informed guidelines for developing such IT applications and their evaluation are scarce. Hence, this scoping review can aid researchers and designers by providing design recommendations for IT apps for caregivers and potentially improve the design of IT applications for caregivers to meet their needs better. Objective: This study aims to describe the proposal for a scoping review of current practices and recommendations in designing and evaluating IT applications for informal caregivers. The scoping review will also discuss the opportunities and challenges in designing these IT applications. Methods: We will use a 5-step scoping review methodology to map relevant literature published as follows: (1) identify the research question, (2) identify relevant studies, (3) select relevant studies for review, (4) chart the data from selected literature, and (5) summarize and report results. A structured search will be conducted in PubMed, Scopus, IEEE digital library, Web of Science, and ACM Digital Library databases. In addition, hand searches of reference lists and keyword searches in Google Scholar will also be conducted. Inclusion criteria will be researched (journal and conference) articles focused on IT applications designed for use by informal caregivers and study type to be qualitative studies. Two reviewers will independently identify articles for review and extract data. Conflicts will be discussed, and a third reviewer will be consulted if a consensus cannot be reached. These data will be analyzed using thematic analysis. Results: The results from this scoping review will be presented in a narrative form, and additional data on study characteristics will be presented in diagrams or tabular format. Uppsala University first initiated this scoping review protocol in December 2021 as part of the European Union--funded project ENTWINE. This work was also supported by the Swedish Research Council and the Swedish Cancer Society. The results will be presented in August 2023 and will be disseminated through a report to the European Union and a peer-reviewed journal publication. In addition, the team plans to share its findings on various public platforms, including social media, blog posts, and relevant conferences and workshops. Conclusions: This is, to our knowledge, the first study to map the literature on the design and evaluation of IT applications for informal caregivers. The scoping review's results will detail the requirements, design suggestions, and user preferences, as well as the usability criteria and features of IT applications for informal caregivers. A mapping of studies could inform the design and implementation of future IT applications for informal caregivers. International Registered Report Identifier (IRRID): DERR1-10.2196/47650 ",
doi="10.2196/47650",
url="https://www.researchprotocols.org/2023/1/e47650",
url="http://www.ncbi.nlm.nih.gov/pubmed/37410533"
}


@Article{info:doi/10.2196/44226,
author="Neil-Sztramko, E. Sarah
and Dobbins, Maureen
and Williams, Allison",
title="Evaluation of a Knowledge Mobilization Campaign to Promote Support for Working Caregivers in Canada: Quantitative Evaluation",
journal="JMIR Form Res",
year="2023",
month="Jun",
day="22",
volume="7",
pages="e44226",
keywords="informal caregiver",
keywords="knowledge mobilization",
keywords="social media",
keywords="workplace standard",
abstract="Background: As population demographics continue to shift, many employees will also be tasked with providing informal care to a friend or family member. The balance between working and caregiving can greatly strain carer-employees. Caregiver-friendly work environments can help reduce this burden. However, there is little awareness of the benefits of these workplace practices, and they have not been widely adopted in Canada. An awareness-generating campaign with the core message ``supporting caregivers at work makes good business sense'' was created leading up to Canada's National Caregivers Day on April 5, 2022. Objective: Our primary objective is to describe the campaign's reach and engagement, including social media, email, and website activity, and our secondary objective is to compare engagement metrics across social media platforms. Methods: An awareness-generating campaign was launched on September 22, 2021, with goals to (1) build awareness about the need for caregiver-friendly workplaces and (2) direct employees and employers to relevant resources on a campaign website. Content was primarily delivered through 4 social media platforms (Twitter, LinkedIn, Facebook, and Instagram), and supplemented by direct emails through a campaign partner, and through webinars. Total reach, defined as the number of impressions, and quality of engagement, defined per social media platform as the engagement rate per post, average site duration, and page depth, were captured and compared through site-specific analytics on Facebook, Instagram, Twitter, and LinkedIn throughout the awareness-generating campaign. The number of views, downloads, bounce rate, and time on the page for the website were counted using Google Analytics. Open and click-through rates were measured using email analytics, and webinar registrants and attendees were also tracked. Results: Data were collected from September 22, 2021, to April 12, 2022. During this time, 30 key messages were developed and disseminated through 74 social media tiles. While Facebook posts generated the most extensive reach (137,098 impressions), the quality of the engagement was low (0.561 engagement per post). Twitter resulted in the highest percentage of impressions that resulted in engagement (24\%), and those who viewed resources through Twitter spent a substantial amount of time on the page (3 minute 5 second). Website users who visited the website through Instagram spent the most time on the website (5 minute 44 second) and had the greatest page depth (2.20 pages), and the overall reach was low (3783). Recipients' engagement with email content met industry standards. Webinar participation ranged from 57 to 78 attendees. Conclusions: This knowledge mobilization campaign reached a large audience and generated engagement in content. Twitter is most helpful for this type of knowledge mobilization. Further work is needed to evaluate the characteristics of individuals engaging in this content and to work more closely with employers and employees to move from engagement and awareness to adopt caregiver-friendly workplace practices. ",
doi="10.2196/44226",
url="https://formative.jmir.org/2023/1/e44226",
url="http://www.ncbi.nlm.nih.gov/pubmed/37347525"
}


@Article{info:doi/10.2196/46808,
author="Fields, Beth
and Werner, Nicole
and Shah, N. Manish
and Hetzel, Scott
and Golden, P. Blair
and Gilmore-Bykovskyi, Andrea
and Farrar Edwards, Dorothy",
title="Adapting and Testing the Care Partner Hospital Assessment Tool for Use in Dementia Care: Protocol for a 2 Sequential Phase Study",
journal="JMIR Res Protoc",
year="2023",
month="Jun",
day="22",
volume="12",
pages="e46808",
keywords="dementia",
keywords="caregiving",
keywords="health care",
keywords="systems",
keywords="co-design",
keywords="randomized control trial",
abstract="Background: Research and policy demonstrate the value of and need for systematically identifying and preparing care partners for their caregiving responsibilities while their family member or friend living with dementia is hospitalized. The Care Partner Hospital Assessment Tool (CHAT) has undergone content and face validation and has been endorsed as appropriate by clinicians to facilitate the timely identification and preparation of care partners of older adult patients during their hospitalization. However, the CHAT has not yet been adapted or prospectively evaluated for use with care partners of hospitalized people living with dementia. Adapting and testing the CHAT via a pilot study will provide the necessary evidence to optimize feasibility and enable future efficacy trials. Objective: The purpose of this paper is to describe the study protocol for the adaptation and testing of the CHAT for use among care partners of hospitalized people living with dementia to better prepare them for their caregiving responsibilities after hospital discharge. Methods: Our protocol is based on the National Institutes of Health Stage Model and consists of 2 sequential phases, including formative research and the main trial. In phase 1, we will use a participatory human-centered design process that incorporates people living with dementia and their care partners, health care administrators, and clinicians to adapt the CHAT for dementia care (ie, the Dementia CHAT [D-CHAT]; stage IA). In phase 2, we will partner with a large academic medical system to complete a pilot randomized controlled trial to examine the feasibility and estimate the size of the effect of the D-CHAT on care partners' preparedness for caregiving (stage IB). We anticipate this study to take approximately 60 months to complete, from study start-up procedures to dissemination. The 2 phases will take place between December 1, 2022, and November 30, 2027. Results: The study protocol will yield (1) a converged-upon, ready-for-feasibility testing D-CHAT; (2) descriptive and feasibility characteristics of delivering the D-CHAT; and (3) effect size estimates of the D-CHAT on care partner preparedness. We anticipate that the resultant D-CHAT will provide clinicians with guidance on how to identify and better prepare care partners for hospitalized people living with dementia. In turn, care partners will feel equipped to fulfill caregiving roles for their family members or friends living with dementia. Conclusions: The expected results of this study are to favorably impact hospital-based care processes and outcomes for people living with dementia and their care partners and to elucidate the essential caregiving role that so many care partners of people living with dementia assume. Trial Registration: ClinicalTrials.gov NCT05592366; https://clinicaltrials.gov/ct2/show/NCT05592366 International Registered Report Identifier (IRRID): PRR1-10.2196/46808 ",
doi="10.2196/46808",
url="https://www.researchprotocols.org/2023/1/e46808",
url="http://www.ncbi.nlm.nih.gov/pubmed/37347517"
}


@Article{info:doi/10.2196/40953,
author="Kelly, M. Ryan
and Xing, Yushan
and Baker, Steven
and Waycott, Jenny",
title="Video Calls as a Replacement for Family Visits During Lockdowns in Aged Care: Interview Study With Family Members",
journal="JMIR Aging",
year="2023",
month="Jun",
day="12",
volume="6",
pages="e40953",
keywords="aged care",
keywords="COVID-19 pandemic",
keywords="lockdowns",
keywords="older adults",
keywords="video calls",
keywords="videoconferencing",
keywords="mobile phone",
keywords="COVID-19",
abstract="Background: Lockdowns have been used to prevent the spread of transmissible illnesses such as influenza, norovirus, and COVID-19 in care homes. However, lockdowns deny care home residents supplemental care and the socioemotional enrichment that comes from seeing family members. Video calling has the potential to enable ongoing contact between residents and family members during lockdowns. However, video calls can be considered by some as a poor substitute for in-person visits. It is important to understand family members' experiences with video calling during lockdowns to ensure the effective use of this technology in the future. Objective: This study aimed to understand how family members use video calls to communicate with relatives living in aged care during lockdowns. We focused on experiences during the COVID-19 pandemic, which involved extensive lockdowns in aged care homes. Methods: We conducted semistructured interviews with 18 adults who had been using video calls with relatives living in aged care during pandemic lockdowns. The interviews focused on how participants had been using video calls, what benefits they gained from video-based interactions, and what challenges they encountered when using the technology. We analyzed the data using the 6-phase reflexive approach to thematic analysis by Braun and Clarke. Results: We developed 4 themes through our analysis. Theme 1 interprets video calling as a medium for the continuation of care during lockdowns. Using video calls, family members were able to provide social enrichment for residents and engaged in health monitoring to uphold residents' welfare. Theme 2 highlights how video calling extended care by supporting frequent contact, transmitting nonverbal cues that were essential for communication, and negating the need for face masks. Theme 3 interprets organizational issues such as the lack of technology and staff time as impediments to the continuation of familial care through video. Finally, theme 4 highlights the need for 2-way communication, interpreting residents' unfamiliarity with video calling and their health conditions as further barriers to the continuation of care. Conclusions: This study suggests that, during restrictions arising from the COVID-19 pandemic, video calls became a medium for enabling family members to continue participating in the care of their relatives. The use of video calls to continue care illustrates their value for families during times of mandatory lockdown and supports the use of video to complement face-to-face visits at other times. However, better support is needed for video calling in aged care homes. This study also revealed a need for video calling systems that are designed for the aged care context. ",
doi="10.2196/40953",
url="https://aging.jmir.org/2023/1/e40953",
url="http://www.ncbi.nlm.nih.gov/pubmed/37191951"
}


@Article{info:doi/10.2196/45748,
author="Ahmad, Awais
and Premanandan, Shweta
and Langeg{\aa}rd, Ulrica
and Cajander, {\AA}sa
and Johansson, Birgitta
and Carlsson, Maria
and Tiblom Ehrsson, Ylva",
title="Positive Design Framework for Carer eSupport: Qualitative Study to Support Informal Caregivers of Patients With Head and Neck Cancer in Sweden",
journal="JMIR Cancer",
year="2023",
month="May",
day="30",
volume="9",
pages="e45748",
keywords="eHealth",
keywords="subjective well-being",
keywords="positive design",
keywords="adaptability",
keywords="informal caregivers",
keywords="head and neck cancer",
keywords="preparedness to care",
abstract="Background: Informal caregivers of patients with head and neck cancer (HNC), such as the patient's spouse, other close relatives, or friends, can play an important role in home-based treatment and health care. Research shows that informal caregivers are usually unprepared for this responsibility and need support with taking care of patients and other daily life activities. These circumstances place them in a vulnerable position, and their well-being may be compromised. This study is part of our ongoing project Carer eSupport, which aims to develop a web-based intervention to facilitate informal caregivers in the home environment. Objective: This study aimed to explore the situation and context of informal caregivers of patients with HNC and their needs for designing and developing a web-based intervention (Carer eSupport). In addition, we proposed a novel framework for the development of a web-based intervention aimed at promoting the well-being of informal caregivers. Methods: Focus groups were conducted with 15 informal caregivers and 13 health care professionals. Both informal caregivers and health care professionals were recruited from 3 university hospitals in Sweden. We adopted a thematic data analysis process to analyze the data. Results: We investigated informal caregivers' needs, critical factors for adoption, and desired functionalities of Carer eSupport. A total of 4 major themes, including information, web-based forum, virtual meeting place, and chatbot, emerged and were discussed by informal caregivers and health care professionals for Carer eSupport. However, most study participants did not like the idea of a chatbot for asking questions and retrieving information and expressed their concerns such as a lack of trust in robotic technologies and missing human contact while communicating with chatbots. The results from the focus groups were discussed through the lens of positive design research approaches. Conclusions: This study provided an in-depth understanding of informal caregivers' contexts and their preferred functions for a web-based intervention (Carer eSupport). Using the theoretical foundation of designing for well-being and positive design in the informal caregiving context, we proposed a positive design framework to support informal caregivers' well-being. Our proposed framework might be helpful for human-computer interaction and user experience researchers to design meaningful eHealth interventions with a clear focus on users' well-being and positive emotions, especially for informal caregivers of patients with HNC. International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2021-057442 ",
doi="10.2196/45748",
url="https://cancer.jmir.org/2023/1/e45748",
url="http://www.ncbi.nlm.nih.gov/pubmed/37252765"
}


@Article{info:doi/10.2196/44750,
author="Castro, R. Aimee
and Ould Brahim, Lydia
and Chen, Qirong
and Arnaert, Antonia
and Quesnel-Vall{\'e}e, Am{\'e}lie
and Moffatt, Karyn
and Kildea, John
and Bitzas, Vasiliki
and Pang, Carolyn
and Hall, Audrey-Jane
and Pagnotta, Ariana
and Tsimicalis, Argerie",
title="Information and Communication Technologies to Support the Provision of Respite Care Services: Scoping Review",
journal="JMIR Nursing",
year="2023",
month="May",
day="30",
volume="6",
pages="e44750",
keywords="caregivers",
keywords="eHealth",
keywords="health services accessibility",
keywords="home care services",
keywords="mHealth",
keywords="respite care",
keywords="short break care",
abstract="Background: Respite care is one of the most frequently requested support services by family caregivers. Yet, too often, respite care services are inaccessible, due in part to families' lack of knowledge regarding available services and a lack of service flexibility. Information and communication technologies (ICTs) may help to improve the flexibility of services available and families' knowledge of such services. However, an understanding of the use of ICTs and research in this area is lacking. Objective: The objective of this study was to provide a comprehensive overview of the academic literature on ICTs for supporting the provision of respite care services. Methods: A scoping review study was conducted. Six library databases were systematically searched for relevant literature. Key data were extracted into a summary chart. Text and quantitative data were coded using descriptive qualitative content analysis techniques, and the results were collated and summarized into a comprehensive narrative. Results: A total of 23 papers describing 15 unique ICT programs exploring the potential of ICTs to support respite care services met the inclusion criteria. ICTs supported the provision of respite care by facilitating information-sharing with families and providers, recruiting and training respite care providers, and coordinating services. Key design considerations for developing respite care ICTs were trustworthiness and participatory design methods. Implementation considerations included designing for complementarity with existing services, assessing the appropriate timing for introducing the ICT-based services, and ensuring adequate promotion strategies to raise awareness about the services. Conclusions: There is limited but promising research on the potential of ICTs to support the provision of respite care services. Further research should be conducted to advance the results of this review, ultimately aiming to build ICTs that can improve the quality of, and access to, respite care services. ",
doi="10.2196/44750",
url="https://nursing.jmir.org/2023/1/e44750",
url="http://www.ncbi.nlm.nih.gov/pubmed/37252760"
}


@Article{info:doi/10.2196/47152,
author="Yu, Ying
and Xiao, Lily
and Ullah, Shahid
and Meyer, Claudia
and Wang, Jing
and Pot, Margriet Anne
and Shifaza, Fathimath",
title="The Experiences of Informal Caregivers of People With Dementia in Web-Based Psychoeducation Programs: Systematic Review and Metasynthesis",
journal="JMIR Aging",
year="2023",
month="May",
day="29",
volume="6",
pages="e47152",
keywords="informal caregivers",
keywords="dementia",
keywords="psychoeducation",
keywords="online",
keywords="web based",
keywords="qualitative research",
keywords="systematic review",
keywords="metasynthesis",
abstract="Background: Informal caregivers of people living with dementia experience a higher level of physical and mental stress compared with other types of caregivers. Psychoeducation programs are viewed as beneficial for building caregivers' knowledge and skills and for decreasing caregiver stress. Objective: This review aimed to synthesize the experiences and perceptions of informal caregivers of people with dementia when participating in web-based psychoeducation programs and the factors that enable and impede informal caregivers' engagement in web-based psychoeducation programs. Methods: This review followed the Joanna Briggs Institute protocol of systematic review and meta-aggregation of qualitative studies. We searched 4 English databases, 4 Chinese databases, and 1 Arabic database in July 2021. Results: A total of 9 studies written in English were included in this review. From these studies, 87 findings were extracted and grouped into 20 categories. These categories were further synthesized into 5 findings: web-based learning as an empowering experience, peer support, satisfactory and unsatisfactory program content, satisfactory and unsatisfactory technical design, and challenges encountered in web-based learning. Conclusions: High-quality and carefully designed web-based psychoeducation programs offered positive experiences for informal caregivers of people living with dementia. To meet broader caregiver education and support needs, program developers should consider information quality and relevancy, the support offered, individual needs, flexibility in delivery, and connectedness between peers and program facilitators. ",
doi="10.2196/47152",
url="https://aging.jmir.org/2023/1/e47152",
url="http://www.ncbi.nlm.nih.gov/pubmed/37247218"
}


@Article{info:doi/10.2196/45533,
author="Bannon, Sarah
and Brewer, Julie
and Cornelius, Talea
and Jackson, Jonathan
and Parker, A. Robert
and Dams-O'Connor, Kristen
and Dickerson, Bradford
and Ritchie, Christine
and Vranceanu, Ana-Maria",
title="Focus Group Study of Medical Stakeholders to Inform the Development of Resilient Together for Dementia: Protocol for a Postdiagnosis Live Video Dyadic Resiliency Intervention",
journal="JMIR Res Protoc",
year="2023",
month="May",
day="29",
volume="12",
pages="e45533",
keywords="dementia",
keywords="stakeholders",
keywords="focus group",
keywords="intervention",
keywords="video",
keywords="telehealth",
abstract="Background: Alzheimer disease and related dementias (ADRD) are increasingly common conditions that disrupt the lives of persons living with dementia and their spousal care partners. At the time of ADRD diagnoses, many couples experience challenges that produce emotional distress and relationship strain. At present, there are no interventions to address these challenges early after diagnoses to promote positive adjustment. Objective: The study protocol described here is part of the first phase of a larger program of research that aims to develop, adapt, and establish the feasibility of Resilient Together for Dementia (RT-ADRD), a novel dyadic skills-based intervention to be delivered over live video early after diagnosis, with the goal of preventing chronic emotional distress. This study will elicit and systematically summarize perspectives of ADRD medical stakeholders to inform the procedures (eg, recruitment and screening methods, eligibility, timing of intervention, and intervention delivery) of the first iteration of RT-ADRD prior to pilot-testing. Methods: We will recruit interdisciplinary medical stakeholders (eg, neurologists, social workers, neuropsychologists, care coordinators, and speech language pathologists) from academic medical center clinics in the departments treating persons living with dementia such as neurology, psychiatry, and geriatric medicine via flyers and word-of-mouth referrals from clinic directors and members of relevant organizations (eg, dementia care collaboratives and Alzheimer disease research centers). The participants will complete electronic screening and consent procedures. Consenting individuals will then participate in a 30- to 60-minute qualitative virtual focus group, held either via telephone or Zoom, using an interview guide designed to assess provider experiences with postdiagnosis clinical care and to gather feedback on the proposed RT-ADRD protocol. The participants will also have the opportunity to participate in an optional exit interview and web-based survey to gather additional feedback. Qualitative data will be analyzed using a hybrid inductive-deductive approach and the framework method for thematic synthesis. We will conduct approximately 6 focus groups with 4-6 individuals in each group (maximum N=30 individuals; until saturation is reached). Results: Data collection began in November 2022 and will continue through June 2023. We anticipate that the study will be completed by late 2023. Conclusions: The results from this study will inform the procedures of the first live video RT-ADRD dyadic resiliency intervention focused on the prevention of chronic emotional and relational distress in couples shortly after ADRD diagnoses. Our study will allow us to gather comprehensive information from stakeholders on ways to best deliver our early prevention--focused intervention and gain detailed feedback on study procedures prior to further testing. International Registered Report Identifier (IRRID): DERR1-10.2196/45533 ",
doi="10.2196/45533",
url="https://www.researchprotocols.org/2023/1/e45533",
url="http://www.ncbi.nlm.nih.gov/pubmed/37247224"
}


@Article{info:doi/10.2196/45045,
author="Liang, Jiaming
and Aranda, P. Maria",
title="The Use of Telehealth Among People Living With Dementia-Caregiver Dyads During the COVID-19 Pandemic: Scoping Review",
journal="J Med Internet Res",
year="2023",
month="May",
day="25",
volume="25",
pages="e45045",
keywords="scoping review",
keywords="COVID-19",
keywords="telehealth",
keywords="people living with dementia",
keywords="family caregiver",
keywords="mobile phone",
abstract="Background: Telehealth has gained substantial attention during the COVID-19 pandemic, and reimbursement policies in health care settings have increased access to remote modes of care delivery. Telehealth has the potential to mitigate care concerns for people living with dementia and their family caregivers. There is a paucity of knowledge on the performance of telehealth services and user experiences, especially among caregiving dyads during the pandemic. Objective: This study aims to describe the implementation, effectiveness, user experience, and barriers to accessing and using telehealth services for people living with dementia and their caregivers during the COVID-19 pandemic. Methods: Following the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist, we searched 7 databases (PubMed, PsycINFO, AgeLine, CINAHL, Social Services Abstracts, Web of Science, and Scopus) and a web-based search engine (Google Scholar). The inclusion criteria for peer-reviewed English publications from March 2020 to August 2022 consisted of studies related to telehealth services for people living with dementia and their family caregivers and studies conducted during the COVID-19 pandemic. Results: A total of 24 articles (10 quantitative and 14 qualitative studies) from 10 different countries were included. The major findings of the reviewed articles were extracted and organized into the following 4 themes: study design characteristics---strategies were adopted to improve the accessibility and experience of people living with dementia-caregiver dyads; efficacy outcomes of telehealth services---robust evidence is lacking on the comparative effectiveness of in-person services; perceived experiences of people living with dementia and caregivers---most reviewed studies reported positive experiences of using telehealth services and perceived personal and social benefits from their participants; and barriers to accessing and using telehealth services---several barriers related to individuals, infrastructure, and telehealth environments were identified. Conclusions: Although evidence of its effectiveness is still limited, telehealth is widely accepted as a viable alternative to in-person care for high-risk groups, such as people living with dementia and their caregivers. Future research should include expanding digital access for those with limited resources and low technology literacy, adopting randomized controlled trial designs to establish the comparative effectiveness of different modes of service delivery, and increasing the sample diversity. ",
doi="10.2196/45045",
url="https://www.jmir.org/2023/1/e45045",
url="http://www.ncbi.nlm.nih.gov/pubmed/37227755"
}


@Article{info:doi/10.2196/45274,
author="Fields, Beth
and Still, Catherine
and Medlin, Austin
and Strayer, Andrea
and Arbaje, I. Alicia
and Gilmore-Bykovskyi, Andrea
and Werner, Nicole",
title="Care Partner Inclusion of People Hospitalized With Alzheimer Disease and Related Dementias: Protocol for a Mixed Methods Systems Engineering Approach to Designing a Health Care System Toolkit",
journal="JMIR Res Protoc",
year="2023",
month="May",
day="16",
volume="12",
pages="e45274",
keywords="caregiving",
keywords="co-design",
keywords="dementia",
keywords="health care",
keywords="systems",
keywords="mixed methods",
abstract="Background: Research and policy demonstrate the value and need for the systematic inclusion of care partners in hospital care delivery of people living with Alzheimer disease and related dementias (ADRD). Support provided to care partners through information and training regarding caregiving responsibilities is important to facilitating their active inclusion and ultimately improving hospital outcomes of people living with ADRD. To promote care partners' active inclusion, a toolkit that guides health systems in the identification, assessment, and training of care partners is needed. User-centered approaches can address this gap in practice by creating toolkits that are practical and responsive to the needs of care partners and their hospitalized family members and friends living with ADRD. Objective: This paper describes the study protocol for the development and refinement of the ADRD Systematic Hospital Inclusion Family Toolkit (A-SHIFT). A-SHIFT will provide health care systems with guidance on how to effectively identify, assess, and train care partners of hospitalized persons living with ADRD. Methods: The A-SHIFT study protocol will use a 3-aimed, convergent mixed method approach to iteratively develop and refine the toolkit. In Aim 1, we will use a systems-engineering approach to characterize patterns of care partner inclusion in hospital care for people living with ADRD. In Aim 2, we will partner with stakeholders to identify and prioritize health care system facilitators and barriers to the inclusion for care partners of hospitalized people living with ADRD. In Aim 3, we will work with stakeholders to co-design an adaptable toolkit to be used by health systems to facilitate the identification, assessment, and training of care partners of hospitalized people living with ADRD. Our convergent mixed method approach will facilitate triangulation across all 3 aims to increase the credibility and transferability of results. We anticipate this study to take 24 months between September 1, 2022, and August 31, 2024. Results: The A-SHIFT study protocol will yield (1) optimal points in the hospital workflow for care partner inclusion, (2) a prioritized list of potentially modifiable barriers and facilitators to including care partners in the hospitalization of people living with ADRD, and (3) a converged-upon, ready for feasibility testing of the toolkit to guide the inclusion of care partners of people living with ADRD in hospital care. Conclusions: We anticipate that the resultant A-SHIFT will provide health systems with a readiness checklist, implementation plan, and resources for identifying, assessing, and training care partners on how to fulfill their caregiving roles for people living with ADRD after hospital discharge. A-SHIFT has the potential to not only improve care partner preparedness but also help reduce health and service use outcomes for people living with ADRD after hospital discharge. International Registered Report Identifier (IRRID): DERR1-10.2196/45274 ",
doi="10.2196/45274",
url="https://www.researchprotocols.org/2023/1/e45274",
url="http://www.ncbi.nlm.nih.gov/pubmed/37191978"
}


@Article{info:doi/10.2196/41260,
author="Merch{\'a}n-Baeza, Antonio Jose
and Borralleras Andreu, Cristina
and Minobes-Molina, Eduard
and Grau Carri{\'o}n, Sergi
and Romero-Mas, Montse
and Ramon-Aribau, Anna",
title="Co-created Technological Solutions for Caregivers in Health Care: Systematic Review",
journal="J Med Internet Res",
year="2023",
month="May",
day="1",
volume="25",
pages="e41260",
keywords="co-creation",
keywords="technological solutions",
keywords="caregivers",
keywords="health care",
keywords="systematic review",
keywords="mobile applications",
abstract="Background: Support interventions for caregivers can reduce their stress, possibly improving the quality of patients' care while reducing care costs. Technological solutions have been designed to cover their needs, but there are some challenges in making them truly functional for end users. Co-design approaches present important opportunities for engaging diverse populations to help ensure that technological solutions are inclusive and accessible. Objective: This study aimed to identify co-created technological solutions, as well as the process followed for their co-creation, in the field of health for caregivers. Methods: The literature review was conducted in the Medline, Web of Science, Scopus, Science Direct, Scielo, and IEEE Xplore databases. The inclusion criteria were studies written in English or Spanish and with a publication date until May 2021. The content had to specify that the caregivers actively participated in the co-creation process, which covered until the development phase of the technological solution (prototype). The level of evidence and the methodological quality were analyzed when possible, using the Scottish Intercollegiate Guidelines Network criteria and the Mixed Methods Appraisal Tool, version 2018, respectively. Results: In total, 410 papers were identified, and 11 met the eligibility criteria. The most predominant articles were mixed methods studies and qualitative studies. The technology used in the analyzed articles were mobile or web applications (9 studies) and specific devices such as sensors, cameras, or alarm systems (2 studies) to support the health and social aspects of caregivers and improve their education in care. The most common patient profile was older people (7 studies); 6 studies used co-creation in the requirements phase, 6 studies detailed the design phase. In 9 studies, the prototype was iteratively refined in the development phase, and the validation phase was performed in 5 of the reviewed studies. Conclusions: This systematic review suggests that existing co-created technological solutions in the field of health for caregivers are mostly mobile or web applications to support caregivers' social health and well-being and improve their health knowledge when delivering care to patients, especially older people. As for the co-creation process, caregivers are particularly involved during development and in the design. The scarce literature found indicates that further research with higher methodological quality is needed. ",
doi="10.2196/41260",
url="https://www.jmir.org/2023/1/e41260",
url="http://www.ncbi.nlm.nih.gov/pubmed/37126384"
}


@Article{info:doi/10.2196/46299,
author="Watland, Solbj{\o}rg
and Solberg Nes, Lise
and Hanson, Elizabeth
and Ekstedt, Mirjam
and Stenberg, Una
and B{\o}r{\o}sund, Elin",
title="The Caregiver Pathway, a Model for the Systematic and Individualized Follow-up of Family Caregivers at Intensive Care Units: Development Study",
journal="JMIR Form Res",
year="2023",
month="Apr",
day="25",
volume="7",
pages="e46299",
keywords="caregivers",
keywords="next of kin",
keywords="relatives",
keywords="family-centered care",
keywords="digital assessment tool",
keywords="nurse intervention",
keywords="intensive care unit",
keywords="ICU",
keywords="post--intensive care syndrome-Family",
keywords="PICS-F",
keywords="empower",
keywords="support",
keywords="follow-up",
keywords="health promotion",
abstract="Background: Family caregivers of patients who are critically ill have a high prevalence of short- and long-term symptoms, such as fatigue, anxiety, depression, symptoms of posttraumatic stress, and complicated grief. These adverse consequences following a loved one's admission to an intensive care unit (ICU) are also known as post--intensive care syndrome-family. Approaches such as family-centered care provide recommendations for improving the care of patients and families, but models for family caregiver follow-up are often lacking. Objective: This study aims to develop a model for structuring and individualizing the follow-up of family caregivers of patients who are critically ill, starting from the patients' ICU admission to after their discharge or death. Methods: The model was developed through a participatory co-design approach using a 2-phased iterative process. First, the preparation phase included a meeting with stakeholders (n=4) for organizational anchoring and planning, a literature search, and interviews with former family caregivers (n=8). In the subsequent development phase, the model was iteratively created through workshops with stakeholders (n=10) and user testing with former family caregivers (n=4) and experienced ICU nurses (n=11). Results: The interviews revealed how being present with the patient and receiving adequate information and emotional care were highly important for family caregivers at an ICU. The literature search underlined the overwhelming and uncertain situation for the family caregivers and identified recommendations for follow-up. On the basis of these recommendations and findings from the interviews, workshops, and user testing, The Caregiver Pathway model was developed, encompassing 4 steps: within the first few days of the patient's ICU stay, the family caregivers will be offered to complete a digital assessment tool mapping their needs and challenges, followed by a conversation with an ICU nurse; when the patient leaves the ICU, a card containing information and support will be handed out to the family caregivers; shortly after the ICU stay, family caregivers will be offered a discharge conversation by phone, focusing on how they are doing and whether they have any questions or concerns; and within 3 months after the ICU stay, an individual follow-up conversation will be offered. Family caregivers will be invited to talk about memories from the ICU and reflect upon the ICU stay, and they will also be able to talk about their current situation and receive information about relevant support. Conclusions: This study illustrates how existing evidence and stakeholder input can be combined to create a model for family caregiver follow-up at an ICU. The Caregiver Pathway can help ICU nurses improve family caregiver follow-up and aid in promoting family-centered care, potentially also being transferrable to other types of family caregiver follow-up. ",
doi="10.2196/46299",
url="https://formative.jmir.org/2023/1/e46299",
url="http://www.ncbi.nlm.nih.gov/pubmed/37097744"
}


@Article{info:doi/10.2196/40762,
author="Thomas, Missy
and Henderson, Dean
and Trudel, Chantal
and Thomas, Neil",
title="Usability of a Community-Based Dementia Resource Website: Mixed Methods Study",
journal="JMIR Aging",
year="2023",
month="Apr",
day="20",
volume="6",
pages="e40762",
keywords="dementia",
keywords="caregivers",
keywords="eHealth",
keywords="community resources",
abstract="Background: Many individuals living with dementia want to live in their own homes for as long as possible. To do so, they frequently require assistance with activities of daily living, which is often provided by friends and relatives acting as informal care partners. In Canada, many informal care partners are currently overworked and overwhelmed. Although community-based dementia-inclusive resources are available to support them, care partners often struggle to find them. Dementia613.ca was created to make the process of finding community dementia-inclusive resources simpler and more straightforward by bringing them together in one eHealth website. Objective: The objective of our study was to determine if dementia613.ca is meeting the goal of connecting care partners and persons living with dementia to dementia-inclusive resources in their community. Methods: A review and assessment of the website was conducted using 3 evaluation methods: web analytics, questionnaires, and task analysis. Google Analytics was used to collect data related to website use over a 9-month period. Data on site content and user characteristics were collected. Furthermore, 2 web-based self-administered questionnaires were developed: one intended for care partners and persons living with dementia, and the other intended for businesses and organizations interested in serving persons living with dementia. Both gathered data on user characteristics and included standard questions used in website evaluations. Responses were collected over a 6-month period. Scenarios, tasks, and questions were developed for the moderated, remote, and task-analysis sessions. These tasks and questions determined how effectively persons living with dementia and their care partners can use dementia613.ca. Overall, 5 sessions were held with persons experiencing moderate cognitive decline and with care partners of persons living with dementia. Results: This evaluation showed that the idea behind dementia613.ca is strong and appeals to persons living with dementia, their care partners, and the businesses and organizations serving this market. Participants indicated that it is a useful community resource that meets a previously unfulfilled need in the area, and highlighted the benefits of bringing community resources together on 1 website. In our questionnaire, >60\% (19/29, 66\%) of people living with dementia and their care partners and 70\% (7/10) of businesses and organizations agreed that the website made it easier to find relevant dementia-inclusive resources. There is room for improvement; participants indicated that the navigation and search features could be further developed. Conclusions: We believe that the dementia613.ca model could be used to inspire and guide the creation of dementia resource websites in other regions in Ontario and beyond. The framework behind it is generalizable and could be replicated to help care partners and persons living with dementia find local resources more easily. ",
doi="10.2196/40762",
url="https://aging.jmir.org/2023/1/e40762",
url="http://www.ncbi.nlm.nih.gov/pubmed/37079355"
}


@Article{info:doi/10.2196/42972,
author="Hong, Alicia Y.
and Shen, Kang
and Han, Hae-Ra
and Ta Park, Van
and Bagchi, Pramita
and Lu, Kate Huixing
and Chen, Hsiaoyin
and Wang, Huei-yu Judy",
title="A WeChat-based Intervention, Wellness Enhancement for Caregivers (WECARE), for Chinese American Dementia Caregivers: Pilot Assessment of Feasibility, Acceptability, and Preliminary Efficacy",
journal="JMIR Aging",
year="2023",
month="Apr",
day="5",
volume="6",
pages="e42972",
keywords="Alzheimer disease",
keywords="dementia",
keywords="caregiver",
keywords="Chinese American",
keywords="mHealth intervention",
keywords="social media",
keywords="WeChat",
keywords="mHealth",
keywords="mobile health",
keywords="informal care",
keywords="caregiving",
keywords="family care",
keywords="spousal care",
keywords="minority",
keywords="ethnic",
keywords="cultural",
keywords="Chinese",
abstract="Background: Chinese American family caregivers of persons with dementia experience high rates of psychosocial distress and adverse health outcomes. Due to their immigrant and minority status, they face substantial obstacles to care and support, including stigma and misperception of dementia, limited knowledge and use of welfare and services, and poor social support. Few interventions have been developed or tested for this vulnerable population. Objective: This study aims to pilot-test the Wellness Enhancement for Caregivers (WECARE) intervention, a culturally tailored program delivered via WeChat, a social media app highly popular in the Chinese population. The 7-week WECARE was designed specifically for Chinese American dementia caregivers to improve their caregiving skills, reduce stress, and enhance psychosocial well-being. Feasibility, acceptability, and preliminary efficacy of the WECARE were assessed in this pilot. Methods: A total of 24 Chinese American family caregivers of persons with dementia were recruited for a pre-post 1-arm trial of the WECARE. By subscribing to the WECARE official account, participants received interactive multimedia programs on their WeChat account multiple times a week for 7 weeks. A backend database automatically delivered program components and tracked user activities. Three online group meetings were organized to facilitate social networking. Participants completed a baseline and a follow-up survey. Feasibility was assessed by the follow-up rate and curriculum completion rate; acceptability was assessed by user satisfaction and perceived usefulness of the program; and efficacy was assessed with pre-post differences in 2 primary outcomes of depressive symptoms and caregiving burden. Results: The intervention was completed by 23 participants with a retention rate of 96\%. Most of them (n=20, 83\%) were older than 50 years and the majority (n=17, 71\%) were female. The backend database revealed that the mean curriculum completion rate was 67\%. Participants also reported high rates of user satisfaction and perceived usefulness of the intervention and high ratings of weekly programs. The intervention led to significant improvement in participants' psychosocial health outcomes; their depressive symptoms reduced from 5.74 to 3.35 with an effect size of ?0.89 and caregiving burden decreased from 25.78 to 21.96 with an effect size of ?0.48. Conclusions: This pilot study suggests that WeChat-based WECARE intervention was feasible and acceptable; it also demonstrated initial efficacy in improving psychosocial well-being in Chinese American dementia caregivers. Further research with a control group is needed to assess its efficacy and effectiveness. The study highlights the need for more culturally appropriate mobile health interventions for Chinese American family caregivers of persons with dementia. ",
doi="10.2196/42972",
url="https://aging.jmir.org/2023/1/e42972",
url="http://www.ncbi.nlm.nih.gov/pubmed/37018042"
}


@Article{info:doi/10.2196/42655,
author="G{\'o}mez-Morales, Abigail
and Coon, David
and Joseph, P. Rodney
and Pipe, Teri",
title="Behind the Scenes of a Technologically Enhanced Intervention for Caregivers of People With Dementia: Protocol for a Feasibility and Acceptability Study",
journal="JMIR Res Protoc",
year="2023",
month="Mar",
day="31",
volume="12",
pages="e42655",
keywords="Alzheimer's disease",
keywords="dementia",
keywords="virtual reality",
keywords="information and communication technology",
keywords="ICT",
keywords="caregivers",
keywords="pilot study",
abstract="Background: Alzheimer's disease affects 55 million people worldwide. As the disease progresses, these individuals require a devoted caregiver, often a family member, who provides evolving complex care. Caregivers can experience a variety of ongoing stressors, resulting in reductions in caregiver emotional well-being (and other quality-of-life indicators). Information and communication technologies provide an excellent opportunity to train caregivers remotely and help them to manage these stressors and related distress. Objective: This protocol describes the theoretical rationale, study design, and methods of a new, technologically enhanced psychoeducational skill-building intervention for caregivers of people with dementia that includes a virtual reality component. Methods: Through Alzheimer's Eyes is a 4-week, single-arm, pre-post test pilot study consisting of 4 sessions of 90 minutes each that are delivered by videoconferencing. These sessions include a weekly virtual reality experience characterizing the journey of an older Latina with Alzheimer's disease from her perspective to help caregivers see through the eyes of a person with dementia. The 4 sessions cover the skill-training topics of communication, managing challenging behaviors and unhelpful thoughts, the importance of self-care, and mindfulness---all of which are key components designed to reduce stress and distress in family caregivers. Individual interviews conducted before and after the intervention gather participant insights into the intervention, evaluate its feasibility and acceptability, and assess its impact on key outcomes. Results: Data collection for the study started in January 2022, and the results are expected to be submitted for publication in the second half of 2023. Twenty caregivers from the United States have completed the workshop to date. Preliminary data gathered from these participants support the intervention's feasibility and acceptability. Conclusions: Through Alzheimer's Eyes leverages existing technology combined with psychoeducational skill building to help caregivers manage their stress, regardless of their location. International Registered Report Identifier (IRRID): DERR1-10.2196/42655 ",
doi="10.2196/42655",
url="https://www.researchprotocols.org/2023/1/e42655",
url="http://www.ncbi.nlm.nih.gov/pubmed/37000480"
}


@Article{info:doi/10.2196/39967,
author="Troeung, Lakkhina
and Tshering, Gap
and Walton, Rebecca
and Martini, Angelita
and Roberts, Martin",
title="Optimizing the Quality of Clinical Data in an Australian Aged Care and Disability Service to Improve Care Delivery and Clinical Outcomes: Protocol for an Agile Lean Six Sigma Study",
journal="JMIR Res Protoc",
year="2023",
month="Mar",
day="27",
volume="12",
pages="e39967",
keywords="aged care",
keywords="disability",
keywords="information technology",
keywords="data",
keywords="quality",
keywords="health services",
abstract="Background: In Australia, aged care and disability service providers are legally required to maintain comprehensive and accurate clinical documentation to meet regulatory and funding requirements and support safe and high-quality care provision. However, evidence suggests that poor-quality clinical data and documentation are widespread across the sector and can substantially affect clinical decision-making and care delivery and increase business costs. Objective: In the Optimizing the Quality of Clinical Data in an Australian Aged Care and Disability Service to Improve Care Delivery and Clinical Outcomes (OPTIMISE) study, we aim to use an Agile Lean Six Sigma framework to identify opportunities for the optimization of clinical documentation processes and clinical information systems, implement and test optimization solutions, and evaluate postoptimization outcomes in a large postacute community-based health service providing aged care and disability services in Western Australia. Methods: A 3-stage prospective optimization study will be conducted. Stage 1 (baseline [T0]) will measure existing clinical data quality, identify root causes of data quality issues across services, and generate optimization solutions. Stage 2 (optimization) will implement and test changes to clinical documentation processes and information systems using incremental Agile sprints. Stage 3 (evaluation) will evaluate changes in primary and secondary outcomes from T0 to 12 months after optimization. The primary outcome is the data quality measured in terms of defects per unit, defects per million opportunities, and Sigma level. The secondary outcomes are care delivery (direct care time), clinical incidents, business outcomes (cost of quality and workforce productivity), and user satisfaction. Case studies will be analyzed to understand the impact of optimization on clinical outcomes and business processes. Results: As of June 1, 2022, stage 1 commenced with T0 data quality audits conducted to measure current data quality. T0 data quality audits will be followed by user consultations to identify root causes of data quality issues. Optimization solutions will be developed by May 2023 to inform optimization (stage 2) and evaluation (stage 3). Results are expected to be published in June 2023. Conclusions: The study findings will be of interest to individuals and organizations in the health care sector seeking novel solutions to improve the quality of clinical data, support high-quality care delivery, and reduce business costs. International Registered Report Identifier (IRRID): DERR1-10.2196/39967 ",
doi="10.2196/39967",
url="https://www.researchprotocols.org/2023/1/e39967",
url="http://www.ncbi.nlm.nih.gov/pubmed/36622197"
}


@Article{info:doi/10.2196/44007,
author="Brown, L. Ellen
and Ruggiano, Nicole
and Allala, Chaithra Sai
and Clarke, J. Peter
and Davis, Debra
and Roberts, Lisa
and Framil, Victoria C.
and Mu{\~n}oz, Hernandez Mar{\'i}ateresa Teri
and Hough, Strauss Monica
and Bourgeois, S. Michelle",
title="Developing a Memory and Communication App for Persons Living With Dementia: An 8-Step Process",
journal="JMIR Aging",
year="2023",
month="Mar",
day="15",
volume="6",
pages="e44007",
keywords="health technology",
keywords="interdisiplinary team",
keywords="older adults",
keywords="dementia",
keywords="communication",
keywords="communication aids for disabled persons",
keywords="communication boards",
keywords="app",
keywords="Alzheimer disease",
keywords="family",
keywords="caregiver",
keywords="clinical care",
keywords="development",
keywords="speech",
keywords="psychosocial intervention",
keywords="software design",
abstract="International Registered Report Identifier (IRRID): RR2-10.3928/19404921-20210825-02 ",
doi="10.2196/44007",
url="https://aging.jmir.org/2023/1/e44007",
url="http://www.ncbi.nlm.nih.gov/pubmed/36920462"
}


@Article{info:doi/10.2196/40634,
author="Haun, N. Jolie
and Melillo, Christine
and Schneider, Tali
and Merzier, M. Marie
and Klanchar, Angelina S.
and Fowler, A. Christopher
and Benzinger, C. Rachel",
title="User Testing of the Veteran Delegation Tool: Qualitative Inquiry",
journal="J Med Internet Res",
year="2023",
month="Feb",
day="23",
volume="25",
pages="e40634",
keywords="electronic health portal",
keywords="human-centered design",
keywords="delegate",
keywords="electronic resources",
keywords="delegation",
keywords="care partner",
keywords="veteran",
keywords="Veteran Delegation Tool",
keywords="Veterans Health Administration",
abstract="Background: Informal caregivers, or care partners, provide critical support to care recipients when managing health care. Veterans Health Administration (VHA) priorities identify care partners as vital in supporting veterans' care management. The Veteran Delegation Tool (VDT) is VHA's Health Insurance Portability and Accountability Act--compliant solution for care partners to comanage veterans' care through VHA's electronic health portal. Human-centered design approaches in VDT development are needed to inform enhancements aimed at promoting uptake and sustained use. Objective: The objective of this prospective descriptive quality improvement project was to use a human-centered design approach to examine VDT use perceptions and practical experiences. Methods: This project was conducted using a 4-phase approach: frame, discover, design, and deliver. The frame phase designed the protocol and prepared the VDT system for testing. This paper reports on the discover phase, which used semistructured and follow-up interviews and user testing to examine VDT's benefits, facilitators, and barriers. The discover phase data informed the design and deliver phases, which are underway. Results: Veterans (24/54, 44\%), care partners (21/54, 39\%), and individuals who represented dual roles (9/54, 17\%)---namely veteran care partner (4/54, 7\%), veteran clinical provider (2/54, 4\%), and care partner provider (3/54, 6\%)---participated in semistructured interviews in the discover phase. A subsample of these participants (3/54, 6\%) participated in the follow-up interviews and user testing. Analysis of the semistructured interviews indicated convergence on the respondents' perceptions of VDT's benefits, facilitators, and barriers and recommendations for improving VDT. The perceived benefits were authorized access, comanagement of care needs on the web, communication with the clinical team, access to resources, and ease of burden. Perceived barriers were nonrecognition of the benefits of VDT, technical literacy access issues, increased stress in or burden on care partners, and personal health information security. Participant experiences across 4 VDT activity domains were upgrade to My HealtheVet Premium account, registration, sign-in, and use. User testing demonstrated users' challenges to register, navigate, and use VDT. Findings informed VDT development enhancements and recommendations. Conclusions: Care partners need Health Insurance Portability and Accountability Act--compliant access to electronic health portals to assist with care management. VDT is VHA's solution, allowing communication among delegates, veterans, and clinical care teams. Users value VDT's potential use and benefits, while access and navigation improvements to ensure uptake and sustained use are needed. Future efforts need to iteratively evaluate the human-centered phases, design and deliver, of VDT to target audiences. Continued efforts to understand and respond to care partners' needs are warranted. ",
doi="10.2196/40634",
url="https://www.jmir.org/2023/1/e40634",
url="http://www.ncbi.nlm.nih.gov/pubmed/36821364"
}


@Article{info:doi/10.2196/42861,
author="Sui, Yufang
and Kor, Kin Patrick Pui
and Li, Mengli
and Wang, Jingjing",
title="Effects of a Social Media--Based Mind-Body Intervention Embedded With Acupressure and Mindfulness for Stress Reduction Among Family Caregivers of Frail Older Adults: Pilot Randomized Controlled Trial",
journal="JMIR Form Res",
year="2023",
month="Feb",
day="20",
volume="7",
pages="e42861",
keywords="mind-body intervention",
keywords="acupressure",
keywords="mindfulness meditation",
keywords="social media",
abstract="Background: Family caregivers of frail older adults experience high levels of stress. Mind-body interventions (MBIs) focused on caregiver stress are often limited in teaching approaches, difficult to practice, and costly. A social media--based MBI embedded with mindfulness meditation (MM) and self-administered acupressure (SA) may be effective for family caregivers, offer greater usability, and lead to greater adherence. Objective: The aim of this study was to test the feasibility and preliminary effects of a social media--based MBI embedded with MM and SA on family caregivers of frail older adults and to investigate the preliminary effects of the intervention using a pilot randomized controlled trial. Methods: A 2-arm randomized controlled trial design was adopted. Family caregivers of frail older adults (n=64) were randomized into either the intervention group (n=32), receiving 8 weeks of social media--based MM and SA, or the control group (n=32), receiving brief education on caregiving for people with frailty. The primary outcome (caregiver stress) and secondary outcomes (caregiver burden, sleep quality, and mindfulness awareness and attention) were measured using a web-based survey at baseline (T0), immediately after the intervention (T1), and at the 3-month follow-up (T2). Results: The feasibility of the intervention was established with a high attendance rate (87.5\%), high usability score (79), and low attrition rate (1.6\%). The generalized estimating equation results showed that participants in the intervention group at T1 and T2 experienced a significant improvement in stress reduction (P=.02 and P=.04, respectively), sleep quality (P=.004 and P=.01, respectively), and mindful awareness and attention (P=.006 and P=.02, respectively) compared with the control group. There were no substantial improvements in caregiver burden at T1 and T2 (P=.59 and P=.47, respectively). A focus group session conducted after the intervention had 5 themes: impact on the family caregivers, difficulty in practicing the intervention, the strength of the program, the limitations of the program, and perception of the intervention. Conclusions: The findings support the feasibility and preliminary effects of social media--based MBI embedded with acupressure and MM on reducing stress among family caregivers of frail older people and enhancing sleep quality and mindfulness levels. A future study with a larger and more diverse sample is proposed to evaluate the longer-term effects and generalizability of the intervention. Trial Registration: Chinese Clinical Trial Registry ChiCTR2100049507; http://www.chictr.org.cn/showproj.aspx?proj=128031 ",
doi="10.2196/42861",
url="https://formative.jmir.org/2023/1/e42861",
url="http://www.ncbi.nlm.nih.gov/pubmed/36804167"
}


@Article{info:doi/10.2196/40604,
author="Boucaud-Maitre, Denis
and Villeneuve, Roxane
and Simo-Tabu{\'e}, Nadine
and Dartigues, Jean-Fran{\c{c}}ois
and Amieva, Helene
and Tabu{\'e}-Teguo, Maturin",
title="The Health Care Trajectories of Older People in Foster Families: Protocol for an Observational Study",
journal="JMIR Res Protoc",
year="2023",
month="Feb",
day="8",
volume="12",
pages="e40604",
keywords="older people",
keywords="foster family",
keywords="hospitalization",
keywords="geriatric syndromes",
keywords="mortality",
keywords="quality of life",
abstract="Background: With aging of the population, the search for alternative models of care adapted to older people with dependency is necessary. In this setting, foster families (1-3 older people per family) could be an alternative to nursing homes, residential care facilities, or community- and home-based care. Objective: The KArukera Study of Ageing in Foster Families is a prospective cohort study designed to investigate the care pathways of older people with dependency in foster care over a year. The 1-year hospitalization rate (main objective), cost of hospitalization, incidence of mortality, prevalence of geriatric syndromes, and quality of life of residents will be assessed. Quality of life and burnout of their respective foster caregivers will also be studied. Methods: This study cohort will include 250 older people living in foster families in Guadeloupe (French West Indies), as well as their respective foster caregivers. Both older people and caregivers will be interviewed concurrently on site at three time points: (1) at baseline, (2) at 6 months, and (3) at 12 months. For older people, we will collect anthropometric measures, cognitive impairment, depressive and anxiety symptoms, functional abilities, physical frailty, information on general health status, quality of life, and care pathways (hospitalization, mortality, and medical and paramedical consultations). We will also assess the quality of life and burnout symptoms of family caregivers at each follow-up. A phone update of vital status (alive or death) and care pathways of residents will be carried out at 3 and 9 months after the baseline examination. Results: Recruitment opened in September 2020 and ended in May 2021, with 109 older people recruited and 56 respective foster caregivers. The 1-year follow-up was ended in June 2022. Data analyses are ongoing and the first results are expected to be published in May 2023. Conclusions: Foster families are a potentially innovative way to accommodate dependent older people. This study could help define the clinical profile of older people adapted to foster families in the transition from frailty to dependency. The effectiveness of foster families, in terms of hospitalizations and mortality, will be compared with other models of care, particularly nursing homes. In this setting, a twin study carried out in nursing homes in Guadeloupe with similar aims and outcomes will be conducted. Beyond mortality and morbidity, the numerous outcomes will allow us to assess the evolution of geriatric syndromes over time. Trial Registration: ClinicalTrials.gov NCT04545775; https://clinicaltrials.gov/ct2/show/NCT04545775 International Registered Report Identifier (IRRID): DERR1-10.2196/40604 ",
doi="10.2196/40604",
url="https://www.researchprotocols.org/2023/1/e40604",
url="http://www.ncbi.nlm.nih.gov/pubmed/36753315"
}


@Article{info:doi/10.2196/43702,
author="McCarthy, Virginia
and Portz, Jennifer
and Fischer, M. Stacy
and Greenway, Emily
and Johnson, L. Rachel
and Knoepke, E. Christopher
and Matlock, D. Daniel
and Omeragic, Faris
and Peterson, A. Ryan
and Ranney, L. Megan
and Betz, E. Marian",
title="A Web-Based Decision Aid for Caregivers of Persons With Dementia With Firearm Access (Safe at Home Study): Protocol for a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2023",
month="Jan",
day="31",
volume="12",
pages="e43702",
keywords="dementia",
keywords="caregiver",
keywords="firearms",
keywords="decision aid decision-making",
keywords="Alzheimers",
keywords="ADRD",
keywords="decision",
keywords="storage",
keywords="web-based",
abstract="Background: Firearm safety among individuals with Alzheimer disease and related dementias (ADRD) is an underdiscussed and underresearched concern in the United States, especially given the growing population of community-dwelling adults with ADRD. The ``Safety in Dementia'' (SiD) web-based decision aid was developed to support caregivers in addressing firearm access; the efficacy of SiD is unknown. Objective: Through the SiD decision aid, the Safe at Home (S@H) study aims to support caregivers in making decisions about home safety that align with their goals and values, and behaviors regarding firearm access for persons with ADRD and firearm access. Methods: The S@H study is a 2-armed randomized controlled trial to test the effect of the SiD decision aid on caregivers of community-dwelling adults with ADRD who have firearm access. S@H aims to recruit 500 ADRD caregivers (age ?18 years, fluent in English or Spanish, and in the United States) through online or social media advertisements and through relevant organizations. Participants are randomized to view SiD or a control website at their own pace; all participants complete web-based questionnaires at baseline, 2 weeks, 2 months, and 6 months. The primary outcome is immediate preparation for decision-making; secondary outcomes include longitudinal decision outcomes and self-reported modifications to firearm access. The relative reach and effectiveness of each recruitment method (online/social media and through relevant organizations) will be assessed by examining differences in caregiver participation, retention rates, and relative cost. Results: The study enrollment began in May 2022. As of December 2022, a total of 117 participants had enrolled. Conclusions: The S@H study is the first randomized trial of a firearm safety decision aid for ADRD caregivers. The results from this study will inform how best to support caregivers in decision-making regarding firearm safety. Further, results may guide approaches for recruiting caregivers and for dissemination of resources. Trial Registration: ClinicalTrials.gov NCT05173922; https://clinicaltrials.gov/ct2/show/NCT05173922 International Registered Report Identifier (IRRID): DERR1-10.2196/43702 ",
doi="10.2196/43702",
url="https://www.researchprotocols.org/2023/1/e43702",
url="http://www.ncbi.nlm.nih.gov/pubmed/36719721"
}


@Article{info:doi/10.2196/40357,
author="Scott, F. Andrew
and Ayers, Stephanie
and Pluye, Pierre
and Grad, Roland
and Sztramko, Richard
and Marr, Sharon
and Papaioannou, Alexandra
and Clark, Sandra
and Gerantonis, Patricia
and Levinson, J. Anthony",
title="Impact and Perceived Value of iGeriCare e-Learning Among Dementia Care Partners and Others: Pilot Evaluation Using the IAM4all Questionnaire",
journal="JMIR Aging",
year="2022",
month="Dec",
day="22",
volume="5",
number="4",
pages="e40357",
keywords="dementia",
keywords="caregiver",
keywords="web-based education",
keywords="internet",
keywords="consumer health information",
keywords="feedback",
keywords="perception",
keywords="survey",
keywords="questionnaire",
keywords="patient education",
keywords="health education",
keywords="care partner",
keywords="caregiving",
keywords="spousal care",
keywords="informal care",
keywords="Alzheimer",
keywords="cognitive impairment",
keywords="cognitively impaired",
keywords="Lewy body",
keywords="gerontology",
keywords="geriatric",
abstract="Background: Care partners of people living with dementia may benefit from web-based education. We developed iGeriCare, an award-winning internet-based platform with 12 multimedia e-learning lessons about dementia. Objective: Our objective was to evaluate users' perceptions of impact. Methods: From March 17, 2021 to May 16, 2022, data were collected upon lesson completion. We used the content-validated Information Assessment Method for all (IAM4all) for patients and the public adapted for dementia care partners. The IAM4all questionnaire assesses outcomes of web-based consumer health information. Responses were collected using SurveyMonkey, and data were analyzed using IBM SPSS Statistics (version 28). Results: A total of 409 responses were collected, with 389 (95.1\%) survey respondents completing the survey. Of 409 respondents, 179 (43.8\%) identified as a family or friend care partner, 84 (20.5\%) identified as an individual concerned they may have mild cognitive impairment or dementia, 380 (92.9\%) identified the lesson as relevant or very relevant, and 403 (98.5\%) understood the lesson well or very well. Over half of respondents felt they were motivated to learn more, they were taught something new, or they felt validated in what they do, while some felt reassured or felt that the lesson refreshed their memory. Of 409 respondents, 401 (98\%) said they would use the information, in particular, to better understand something, discuss the information with someone else, do things differently, or do something. Conclusions: Users identified iGeriCare as relevant and beneficial and said that they would use the information. To our knowledge, this is the first time the IAM4all questionnaire has been used to assess patient and caregiver feedback on internet-based dementia education resources. A randomized controlled trial to study feasibility and impact on caregiver knowledge, self-efficacy, and burden is in progress. ",
doi="10.2196/40357",
url="https://aging.jmir.org/2022/4/e40357",
url="http://www.ncbi.nlm.nih.gov/pubmed/36150051"
}


@Article{info:doi/10.2196/43098,
author="Harris, Melissa
and Van Houtven, Courtney
and Hastings, Susan",
title="Development of a Home-Based Stress Management Toolkit for Dementia Caring Dyads: Protocol for a Pilot Intervention Development and Feasibility Study",
journal="JMIR Res Protoc",
year="2022",
month="Dec",
day="14",
volume="11",
number="12",
pages="e43098",
keywords="dementia",
keywords="stress",
keywords="caregiver",
keywords="dyad",
keywords="intervention",
keywords="nonpharmacologic",
abstract="Background: People living with dementia (PLWD) and their care partners (dementia caring dyads) are at a heightened risk of experiencing stress-related symptoms and conditions. Yet, many dyadic stress management interventions have had limited uptake by health care systems and in the community. An intervention that combines simple, safe, easy-to-use, nonpharmacologic tools (eg, animatronic social pets, weighted blankets and garments, aromatherapy and bright light therapy devices, acupressure, and massage tools) that can be used in the home may be a promising approach to promote stress management among dementia caring dyads. Objective: The proposed study aims to develop and user test a dyadic toolkit intervention composed of simple, tangible stress management tools for community-dwelling PLWD and their care partners. This study will also explore the feasibility of collecting several stress-related outcome measures to inform measurement selection for future studies. Methods: A human-centered design (HCD) approach will be used to increase the likelihood of developing an intervention that will be translatable to real-world settings. This study consists of 2 phases. The first phase will address the discover, define, and design stages of HCD using qualitative focus groups with dementia caring dyads (N=12-16 dyads). Dyadic focus groups (3-4 groups anticipated) will be convened to understand participants' stress experiences and to co-design a stress management toolkit prototype. Rapid qualitative analysis will be used to analyze focus group data. In phase 2, the toolkit prototype will be user tested for 2 weeks in a new sample to address the validation step of HCD. A within-subjects (n=10 dyads), pre-post design will be used with measures of usability (frequency of toolkit use), feasibility (enrollment and withdrawal rates, adverse events/injuries), and acceptability (satisfaction, benefit) collected via questionnaires (at the end of weeks 1 and 2 of user testing) and focus groups (n=3-4 dyads/group at the end of week 2). The feasibility of collecting participant-reported, stress-related outcomes (neuropsychiatric symptoms of dementia, caregiver stress, dyadic relationship strain) and salivary cortisol as a physiologic measure of stress will be assessed at baseline and after user testing. Results: This study will yield a working prototype of a stress management toolkit for dementia caring dyads, as well as preliminary data to support the feasibility and acceptability of the intervention. User testing will elucidate areas to refine the prototype and provide data to inform preliminary testing of the intervention. As of September 2022, this study has received institutional ethics board approval with phase 1 recruitment anticipated to begin January 2023. Conclusions: Few interventions have focused on combining simple, safe, low burden tools to promote stress management among community-dwelling dementia caring dyads. By involving families and exploring feasibility and acceptability at the onset of development, this intervention will have greater potential to be implemented and sustained in the future. Trial Registration: ClinicalTrials.gov NCT05465551; https://clinicaltrials.gov/ct2/show/NCT05465551 International Registered Report Identifier (IRRID): PRR1-10.2196/43098 ",
doi="10.2196/43098",
url="https://www.researchprotocols.org/2022/12/e43098",
url="http://www.ncbi.nlm.nih.gov/pubmed/36399169"
}


@Article{info:doi/10.2196/42731,
author="Garnett, Anna
and Connelly, Denise
and Yous, Marie-Lee
and Hung, Lillian
and Snobelen, Nancy
and Hay, Melissa
and Furlan-Craievich, Cherie
and Snelgrove, Shannon
and Babcock, Melissa
and Ripley, Jacqueline
and Hamilton, Pam
and Sturdy-Smith, Cathy
and O'Connell, Maureen",
title="Nurse-Led Virtual Delivery of PIECES in Canadian Long-Term Care Homes to Support the Care of Older Adults Experiencing Responsive Behaviors During COVID-19: Qualitative Descriptive Study",
journal="JMIR Nursing",
year="2022",
month="Dec",
day="13",
volume="5",
number="1",
pages="e42731",
keywords="long-term care",
keywords="older adults",
keywords="families",
keywords="responsive behaviors",
keywords="qualitative",
keywords="COVID-19",
keywords="PIECES",
keywords="nurse(s)",
keywords="care home",
keywords="infection",
keywords="therapeutic",
keywords="anxiety",
keywords="depression",
keywords="cognitive",
keywords="fear",
keywords="death",
keywords="dementia",
keywords="communication",
keywords="technology",
abstract="Background: Worldwide, the COVID-19 pandemic has resulted in profound loss of life among older adults living in long-term care (LTC) homes. As a pandemic response, LTC homes enforced infection control processes, including isolating older adults in their rooms, canceling therapeutic programs, and restricting family member visits. Social isolation negatively impacts older adults in LTC, which may result in increased rates of anxiety, depression, physical and cognitive decline, disorientation, fear, apathy, and premature death. Isolation of older adults can also cause an increase in responsive behaviors (eg, yelling, hitting, calling out) to express frustration, fear, restricted movement, and boredom. To respond to the challenges in LTC and support frontline staff, older adults, and family members, a novel registered practical nurse (RPN)-led delivery of the PIECES approach for addressing responsive behaviors among older adults with dementia using virtual training/mentoring was implemented in Canadian LTC homes. PIECES employs a person- and family/care partner--centered collaborative team-based approach to provide education and capacity-building for nurses; engages families as active participants in care; and embeds evidence-informed practices to provide person- and family-centered care to older adults with complex needs, including dementia. Objective: The aim of this study was to describe the experiences of LTC staff, family/care partners, and older adult research partners with implementation of a novel RPN-led virtual adaptation of the PIECES care-planning approach for responsive behaviors in two Canadian LTC homes during the COVID-19 pandemic. Methods: Using a qualitative descriptive design, two focus groups were held with three to four staff members (eg, RPNs, managers) per LTC home in Ontario. A third focus group was held with three PIECES mentors. Individual semistructured interviews were conducted with RPN champions, family/care partners, and older adult research partners. Research team meeting notes provided an additional source of data. Content analysis was performed. Results: A total of 22 participants took part in a focus group (n=11) or an in-depth individual interview (n=11). Participant experiences suggest that implementation of RPN-led virtual PIECES fostered individualized care, included family as partners in care, increased interdisciplinary collaboration, and improved staff practices. However, virtual PIECES, as delivered, lacked opportunities for family member feedback on older adult outcomes. Implementation facilitators included the provision of mentorship and leadership at all levels of implementation and suitable technological infrastructure. Barriers were related to availability and use of virtual communication technology (family members) and older adults became upset due to lack of comprehension during virtual care conferences. Conclusions: These findings offer promising support to adopting virtual PIECES, a team approach to gather valuable family input and engagement to address residents' unmet needs and responsive behaviors in LTC. Future research should investigate a hybridized communication format to foster sustainable person- and family-centered care-planning practices to include active collaboration of families in individualized care plans. ",
doi="10.2196/42731",
url="https://nursing.jmir.org/2022/1/e42731",
url="http://www.ncbi.nlm.nih.gov/pubmed/36446050"
}


@Article{info:doi/10.2196/38656,
author="Christie, Liane Hannah
and Dam, Henrike Alieske Elisabeth
and van Boxtel, Martin
and K{\"o}hler, Sebastian
and Verhey, Frans
and de Vugt, Elisabeth Marjolein",
title="Lessons Learned From an Effectiveness Evaluation of Inlife, a Web-Based Social Support Intervention for Caregivers of People With Dementia: Randomized Controlled Trial",
journal="JMIR Aging",
year="2022",
month="Dec",
day="7",
volume="5",
number="4",
pages="e38656",
keywords="dementia",
keywords="Alzheimer's",
keywords="neurodegenerative",
keywords="caregiver",
keywords="caregiving",
keywords="digital health",
keywords="eHealth",
keywords="mHealth",
keywords="Information communication technology",
keywords="RCT",
keywords="randomized controlled trial",
keywords="social support",
keywords="support platform",
keywords="online platform",
keywords="web-based",
keywords="internet-based",
keywords="peer-support",
keywords="informal support",
keywords="social interaction",
keywords="support network",
abstract="Background: Informal care for people with dementia not only affects the well-being of the primary caregiver but also changes their roles and interactions with the social environment. New online interventions might facilitate access to social support. Recently, an online social support platform, Inlife, was developed in the Netherlands and aims to enhance social support and positive interactions in informal support networks. Objective: This study aimed to evaluate the effectiveness of Inlife for caregivers of people with dementia. Methods: A randomized controlled trial with 96 caregivers of people with dementia was performed. Participants were randomly assigned to the Inlife intervention or the waiting list control group. After 16 weeks of Inlife use, the waiting list control group could start using Inlife. Effects were evaluated at baseline (T0), 8 weeks (T1), and 16 weeks (T2). The 16-week follow-up assessment (T2) served as the primary endpoint to evaluate the results for the primary and secondary outcome variables evaluated with online self-report questionnaires. The primary outcomes included feelings of caregiver competence and perceived social support. The secondary outcomes included received support, feelings of loneliness, psychological complaints (eg, anxiety, stress), and quality of life. Results: No significant improvements were demonstrated for the intervention group (n=48) relative to the control group (n=48) for the primary outcomes (feeling of carer competence: b=--0.057, 95\% CI --0.715 to 0.602, P=.87; perceived social support: b=--15.877, 95\% CI --78.284 to 46.530, P=.62) or any secondary outcome. This contrasts with our qualitative findings showing the potential of Inlife to facilitate the care process in daily life. Adherence was not optimal for all Inlife users. Additional per-protocol and sensitivity analyses also revealed no beneficial results for high active Inlife users or specific subgroups. Inlife users were more active when part of a larger network. Conclusions: Researchers should be modest regarding the effectiveness of online caregiver interventions in terms of quantitative measures of well-being and quality of life. Nevertheless, online tools have the potential to facilitate the caregiver process in daily life. Lessons learned include the importance of harnessing the power of human interaction in eHealth, making use of the user's social capital, and the need to develop research methods that can identify benefits in daily life that are ecologically valid for caregivers. Trial Registration: Netherlands Trial Register NTR6131; https://trialsearch.who.int/Trial2.aspx?TrialID=NTR6131 International Registered Report Identifier (IRRID): RR2-10.1186/s13063-017-2097-y ",
doi="10.2196/38656",
url="https://aging.jmir.org/2022/4/e38656",
url="http://www.ncbi.nlm.nih.gov/pubmed/36476485"
}


@Article{info:doi/10.2196/40360,
author="Seah, L. Cassandra E.
and Zhang, Zheyuan
and Sun, Sijin
and Wiskerke, Esther
and Daniels, Sarah
and Porat, Talya
and Calvo, A. Rafael",
title="Designing Mindfulness Conversational Agents for People With Early-Stage Dementia and Their Caregivers: Thematic Analysis of Expert and User Perspectives",
journal="JMIR Aging",
year="2022",
month="Dec",
day="6",
volume="5",
number="4",
pages="e40360",
keywords="mindfulness",
keywords="dyadic",
keywords="dementia",
keywords="caregivers",
keywords="user needs",
keywords="intervention",
keywords="user",
keywords="feedback",
keywords="design",
keywords="accessibility",
keywords="relationships",
keywords="mindset",
keywords="essential",
abstract="Background: The number of people with dementia is expected to grow worldwide. Among the ways to support both persons with early-stage dementia and their caregivers (dyads), researchers are studying mindfulness interventions. However, few studies have explored technology-enhanced mindfulness interventions for dyads and the needs of persons with dementia and their caregivers. Objective: The main aim of this study was to elicit essential needs from people with dementia, their caregivers, dementia experts, and mindfulness experts to identify themes that can be used in the design of mindfulness conversational agents for dyads. Methods: Semistructured interviews were conducted with 5 dementia experts, 5 mindfulness experts, 5 people with early-stage dementia, and 5 dementia caregivers. Interviews were transcribed and coded on NVivo (QSR International) before themes were identified through a bottom-up inductive approach. Results: The results revealed that dyadic mindfulness is preferred and that implementation formats such as conversational agents have potential. A total of 5 common themes were also identified from expert and user feedback, which should be used to design mindfulness conversational agents for persons with dementia and their caregivers. The 5 themes included enhancing accessibility, cultivating positivity, providing simplified tangible and thought-based activities, encouraging a mindful mindset shift, and enhancing relationships. Conclusions: In essence, this research concluded with 5 themes that mindfulness conversational agents could be designed based on to meet the needs of persons with dementia and their caregivers. ",
doi="10.2196/40360",
url="https://aging.jmir.org/2022/4/e40360",
url="http://www.ncbi.nlm.nih.gov/pubmed/36472897"
}


@Article{info:doi/10.2196/41891,
author="Coumoundouros, Chelsea
and M{\aa}rtensson, Erika
and Ferraris, Giulia
and Zuidberg, Margaux Justine
and von Essen, Louise
and Sanderman, Robbert
and Woodford, Joanne",
title="Implementation of e--Mental Health Interventions for Informal Caregivers of Adults With Chronic Diseases: Mixed Methods Systematic Review With a Qualitative Comparative Analysis and Thematic Synthesis",
journal="JMIR Ment Health",
year="2022",
month="Nov",
day="30",
volume="9",
number="11",
pages="e41891",
keywords="informal caregivers",
keywords="e--mental health",
keywords="implementation",
keywords="chronic diseases",
keywords="systematic review",
keywords="thematic synthesis",
keywords="qualitative comparative analysis",
keywords="Consolidated Framework for Implementation Research",
abstract="Background: Informal caregivers commonly experience mental health difficulties related to their caregiving role. e--Mental health interventions provide mental health support in a format that may be more accessible to informal caregivers. However, e--mental health interventions are seldom implemented in real-world practice. Objective: This mixed methods systematic review aimed to examine factors associated with the effectiveness and implementation of e--mental health interventions for informal caregivers of adults with chronic diseases. To achieve this aim, two approaches were adopted: combinations of implementation and intervention characteristics sufficient for intervention effectiveness were explored using qualitative comparative analysis, and barriers to and facilitators of implementation of e--mental health interventions for informal caregivers were explored using thematic synthesis. Methods: We identified relevant studies published from January 1, 2007, to July 6, 2022, by systematically searching 6 electronic databases and various secondary search strategies. Included studies reported on the effectiveness or implementation of e--mental health interventions for informal caregivers of adults with cancer, chronic obstructive pulmonary disease, dementia, diabetes, heart disease, or stroke. Randomized controlled trials reporting on caregivers' mental health outcomes were included in a crisp-set qualitative comparative analysis. We assessed randomized controlled trials for bias using the Risk of Bias 2.0 tool, and we assessed how pragmatic or explanatory their trial design was using the Pragmatic Explanatory Continuum Indicator Summary 2 tool. Studies of any design reporting on implementation were included in a thematic synthesis using the Consolidated Framework for Implementation Research to identify barriers to and facilitators of implementation. Results: Overall, 53 reports, representing 29 interventions, were included in the review. Most interventions (27/29, 93\%) focused on informal cancer or dementia caregivers. In total, 14 reports were included in the qualitative comparative analysis, exploring conditions including the presence of peer or professional support and key persuasive design features. Low consistency and coverage prevented the determination of condition sets sufficient for intervention effectiveness. Overall, 44 reports were included in the thematic synthesis, and 152 barriers and facilitators were identified, with the majority related to the intervention and individual characteristic domains of the Consolidated Framework for Implementation Research. Implementation barriers and facilitators in the inner setting (eg, organizational culture) and outer setting (eg, external policies and resources) domains were largely unexplored. Conclusions: e--Mental health interventions for informal caregivers tend to be well-designed, with several barriers to and facilitators of implementation identified related to the intervention and individual user characteristics. Future work should focus on exploring the views of stakeholders involved in implementation to determine barriers to and facilitators of implementing e--mental health interventions for informal caregivers, focusing on inner and outer setting barriers and facilitators. Trial Registration: PROSPERO (International Prospective Register of Systematic Reviews) CRD42020155727; https://www.crd.york.ac.uk/prospero/display\_record.php?ID=CRD42020155727 International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2019-035406 ",
doi="10.2196/41891",
url="https://mental.jmir.org/2022/11/e41891",
url="http://www.ncbi.nlm.nih.gov/pubmed/36314782"
}


@Article{info:doi/10.2196/39199,
author="Ahmed, Mona
and Mar{\'i}n, Mayca
and How, Daniella
and Judica, Elda
and Tropea, Peppino
and Bentlage, Ellen
and J Ferreira, Joaquim
and Bou{\c{c}}a-Machado, Raquel
and Brach, Michael",
title="End Users' and Other Stakeholders' Needs and Requirements in the Development of a Personalized Integrated Care Platform (PROCare4Life) for Older People With Dementia or Parkinson Disease: Mixed Methods Study",
journal="JMIR Form Res",
year="2022",
month="Nov",
day="30",
volume="6",
number="11",
pages="e39199",
keywords="neurodegenerative",
keywords="Parkinson disease",
keywords="dementia",
keywords="chronic diseases",
keywords="health care technologies",
keywords="integrated care",
keywords="information and communication technology",
keywords="ICT",
keywords="user-centered design",
keywords="mobile phone",
abstract="Background: With what has been known as the ``triple-win effect'', introducing information and communication technologies (ICTs) in the health care of neurodegenerative diseases is beneficial in delaying the need for institutional care, reducing the associated health care costs, reducing the caregiving burden, and improving individuals' quality of life. Nevertheless, the mismatch between the users' expectations and their actual needs remains one of the main challenges that can reduce the usability of technology solutions. Therefore, the European project Personalized Integrated Care Promoting Quality of Life for Older People (PROCare4Life), which aimed to develop an ICT-based platform for all parties involved in the health care of neurodegenerative diseases, adopted a user-centered design approach, where all users are involved from the inception and throughout the platform development and implementation to integrate their needs and requirements in the proposed platform. Objective: This paper presents the results of a study on the needs and requirements of the potential end users (older people with neurodegenerative diseases, caregivers, and health care professionals) and other key stakeholders in the development of the PROCare4Life platform. Methods: A mixed qualitative and quantitative study design was used, including 2 web-based surveys, 40 interviews, and 4 workshops. The study was conducted between April and September 2020 in 5 European countries: Germany, Italy, Portugal, Romania, and Spain. Both data types were analyzed separately and then merged and interpreted, with greater priority placed on qualitative research. Results: A total of 217 participants were recruited; 157 (72.4\%) of them completed the web-based surveys (n=85, 54.1\% patients and n=72, 45.9\% caregivers), and 60 (27.6\%) individuals participated in the qualitative research (20/60, 33\% health care professionals; 5/60, 8\% patients; 5/60, 8\% caregivers; and 30/60, 50\% key stakeholders). We identified 3 main themes (T): (T1) experiences associated with illness, (T2) thoughts about the platform technology, and (T3) desired properties. Alerts for adverse events, communication tools, reminders, and monitoring are constantly needed functionalities, whereas ease of use, personalization, and user-friendliness are foreseen as necessary features. Conclusions: This paper identified the key personal, social, and health factors that influence the daily lives of the potential end users and reflected on their needs and expectations regarding the design of the proposed PROCare4Life platform. The collected data were useful for the development of the PROCare4Life platform. Although the combination and collection of features for diverse user groups are typical for integrated care platforms, it results in exponential complexity for designers, developers, and users. Contradicting opinions and several concerns in this study demonstrate that an ICT-integrated care platform should not promise too much for too many. Instead, selection, focus, and, sometimes, restriction to essentials are necessary. Users and other stakeholders should be involved in these decisions. International Registered Report Identifier (IRRID): RR2-10.2196/22463 ",
doi="10.2196/39199",
url="https://formative.jmir.org/2022/11/e39199",
url="http://www.ncbi.nlm.nih.gov/pubmed/36449340"
}


@Article{info:doi/10.2196/39174,
author="Scott Duncan, Therese
and Engstr{\"o}m, Jon
and Riggare, Sara
and H{\"a}gglund, Maria
and Koch, Sabine",
title="Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers",
journal="J Particip Med",
year="2022",
month="Nov",
day="16",
volume="14",
number="1",
pages="e39174",
keywords="behaviors",
keywords="chronic conditions",
keywords="model of illness-related work",
keywords="empowerment",
keywords="self-management",
abstract="Background: Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce. Objective: We aimed to explore empowering behaviors from a patient and informal caregiver perspective in the context of self-management and to understand how health care can support such behaviors better. Methods: We used an exploratory, qualitative study design. A total of 15 semistructured interviews and 6 focus group interviews were conducted with 48 patients and informal caregivers. We analyzed the interviews using thematic analysis and used a directed content analysis to analyze the focus group interviews. Results: A total of 14 patterns of empowering behaviors were identified that were characterized by several exploratory and influencing activities performed by the participants. The participants expressed a desire to be more active in their care than what is expected and supported by health care professionals. The participants also desired better support for activities imposed on them by health care professionals. Conclusions: To enable a transformation of the health care system to better support self-empowering behaviors, there is a need to develop self-management approaches from a patient and informal caregiver perspective. ",
doi="10.2196/39174",
url="https://jopm.jmir.org/2022/1/e39174",
url="http://www.ncbi.nlm.nih.gov/pubmed/36383418"
}


@Article{info:doi/10.2196/37496,
author="Pasquini, Sara
and Margaritini, Arianna
and Gambella, Elena
and Di Rosa, Mirko
and Maranesi, Elvira
and Bevilacqua, Roberta
and Civerchia, Patrizia
and Pelliccioni, Giuseppe",
title="A Psychosocial Intervention for Supporting Informal Caregivers of Older People With Alzheimer Disease: Protocol for the InnFamiglia Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2022",
month="Nov",
day="11",
volume="11",
number="11",
pages="e37496",
keywords="Alzheimer disease",
keywords="caregiver burden",
keywords="psychosocial intervention",
keywords="self-help",
keywords="emotional support",
keywords="randomized controlled trial",
keywords="dementia",
abstract="Background: Dementia is a neurodegenerative syndrome characterized by impaired cognitive functions associated with psychological and behavioral disorders. The informal caregiver has a central role in the life of the person with dementia. Committing a large part of the day to caring for the assisted person inevitably has an effect on the caregiver's life. Objective: The aim of this study is to analyze the impact of a psychosocial intervention dedicated to a group of informal caregivers of patients with Alzheimer disease. The intervention will be guided by a trained psychologist who will facilitate the participants' expression of their emotional states, as compared to a traditional self-help group. Methods: The intervention described in this paper was designed and developed for the project INNovazione sociale e tecnologica per le FAMIGLIE che assistono malati affetti da Alzheimer (InnFamiglia). The study is designed as a randomized controlled trial (RCT). The RCT includes an experimental group, in which the participants will undertake the psychosocial intervention, and a control group, where participants will receive support according to traditional self-help methodology. Interventions for both groups will last 4 months and will be comprised of 16 sessions. Results: Participant recruitment, enrollment, and data collection began in 2021. Enrollment continued until September 2022, at which time the last group began the intervention. Data collection will be completed by December 2022, and data analysis will be completed by March 2023. The study findings will be published in peer-reviewed scientific journals and will be presented at scientific meetings. Summaries of the results will also be made available to investigators for dissemination within their clinics. Conclusions: We hypothesize that the experimental group will be more effective in managing caregiver burden and coping strategies and that this will improve the perception of well-being, anxiety, and depression among caregivers. Our study aims to compare two groups receiving different interventions: a self-help group and a psychosocial group with elements of emotional support. This study may also give us more information about the most appropriate ways to support and help caregivers of people with dementia. International Registered Report Identifier (IRRID): DERR1-10.2196/37496 ",
doi="10.2196/37496",
url="https://www.researchprotocols.org/2022/11/e37496",
url="http://www.ncbi.nlm.nih.gov/pubmed/36367770"
}


@Article{info:doi/10.2196/41015,
author="Jose, Ambily
and Sasseville, Maxime
and Dequanter, Samantha
and Gorus, Ellen
and Gigu{\`e}re, Anik
and Bourbonnais, Anne
and Abbasgholizadeh Rahimi, Samira
and Buyl, Ronald
and Gagnon, Marie-Pierre",
title="Existing eHealth Solutions for Older Adults Living With Neurocognitive Disorders (Mild and Major) or Dementia and Their Informal Caregivers: Protocol for an Environmental Scan",
journal="JMIR Res Protoc",
year="2022",
month="Nov",
day="4",
volume="11",
number="11",
pages="e41015",
keywords="dementia",
keywords="eHealth solutions",
keywords="mild cognitive impairment (MCI)",
keywords="environmental scan",
keywords="digital health",
abstract="Background: Dementia is one of the main public health priorities for current and future societies worldwide. Over the past years, eHealth solutions have added numerous promising solutions to enhance the health and wellness of people living with dementia-related cognitive problems and their primary caregivers. Previous studies have shown that an environmental scan identifies the knowledge-to-action gap meaningfully. This paper presents the protocol of an environmental scan to monitor the currently available eHealth solutions targeting dementia and other neurocognitive disorders against selected attributes. Objective: This study aims to identify the characteristics of currently available eHealth solutions recommended for older adults with cognitive problems and their informal caregivers. To inform the recommendations regarding eHealth solutions for these people, it is important to obtain a comprehensive view of currently available technologies and document their outcomes and conditions of success. Methods: We will perform an environmental scan of available eHealth solutions for older adults with cognitive impairment or dementia and their informal caregivers. Potential solutions will be initially identified from a previous systematic review. We will also conduct targeted searches for gray literature on Google and specialized websites covering the regions of Canada and Europe. Technological tools will be scanned based on a preformatted extraction grid. The relevance and efficiency based on the selected attributes will be assessed. Results: We will prioritize relevant solutions based on the needs and preferences identified from a qualitative study among older adults with cognitive impairment or dementia and their informal caregivers. Conclusions: This environmental scan will identify eHealth solutions that are currently available and scientifically appraised for older adults with cognitive impairment or dementia and their informal caregivers. This knowledge will inform the development of a decision support tool to assist older adults and their informal caregivers in their search for adequate eHealth solutions according to their needs and preferences based on trustable information. International Registered Report Identifier (IRRID): DERR1-10.2196/41015 ",
doi="10.2196/41015",
url="https://www.researchprotocols.org/2022/11/e41015",
url="http://www.ncbi.nlm.nih.gov/pubmed/36331531"
}


@Article{info:doi/10.2196/40528,
author="Isabet, Baptiste
and Rigaud, Anne-Sophie
and Li, Wanji
and Pino, Maribel",
title="Telepresence Robot Intervention to Reduce Loneliness and Social Isolation in Older Adults Living at Home (Project DOMIROB): Protocol for a Clinical Nonrandomized Study",
journal="JMIR Res Protoc",
year="2022",
month="Oct",
day="31",
volume="11",
number="10",
pages="e40528",
keywords="older adults",
keywords="telepresence robot",
keywords="feeling of loneliness",
keywords="social isolation",
keywords="home",
keywords="acceptability",
keywords="usability",
abstract="Background: There is a growing prevalence of loneliness and social isolation among older adults (OAs). These problems are often associated with depressive states, cognitive decline, sleep disorders, addictions, and increased mortality. To limit loneliness and social isolation in OAs, some authors recommend the use of new communication technologies to maintain a social link with family members as well as with health and social care professionals. Among these communication tools, telepresence robots (TRs) seem to be a promising solution. These robots offer users the possibility of making video calls with their relatives, social workers, and health care professionals, to maintain social contact and access to support services while living at home. Nevertheless, TRs have been relatively unstudied in real-life environments. Objective: The main objective of this study is to measure the impact of a 12-week intervention using a TR on the feeling of loneliness and on social isolation of OAs living at home. Its secondary objective is to establish recommendations for the implementation of TRs in the studied context. Methods: A nonrandomized study will be conducted among 60 OAs living at home who will participate in the study for 24 weeks. During this period, they will host a TR for 12 weeks to use it in their home. After the end of the intervention a 12-week follow-up ensues. In total, 4 evaluations will be performed over the entire experimental phase for each participant at weeks 0, 6, 12, and 24. A multidimensional assessment of the impact of the robot will be performed using a multimethod approach including standardized scales and a semistructured interview. This assessment will also help to identify the ergonomic aspects that influence the robot's usability and acceptability among OAs. Results: Data collection started in September 2020 and is expected to be completed in early 2023. In August 2022, 56 participants were recruited for the study. Data analysis will take place between August 2022 and is expected to be completed in early 2023. Conclusions: The DOMIROB study will provide new knowledge on the impact of social TRs in OAs living at home. The results will make it possible to suggest technological, ethical, and organizational recommendations for the use and implementation of TRs for OAs in real-life settings. Trial Registration: ClinicalTrials.gov NCT04767100; https://clinicaltrials.gov/ct2/show/NCT04767100 International Registered Report Identifier (IRRID): DERR1-10.2196/40528 ",
doi="10.2196/40528",
url="https://www.researchprotocols.org/2022/10/e40528",
url="http://www.ncbi.nlm.nih.gov/pubmed/36315231"
}


@Article{info:doi/10.2196/36607,
author="Chodosh, Joshua
and Connor, Karen
and Fowler, Nicole
and Gao, Sujuan
and Perkins, Anthony
and Grudzen, Corita
and Messina, Frank
and Mangold, Michael
and Smilowitz, Jessica
and Boustani, Malaz
and Borson, Soo",
title="Program of Intensive Support in Emergency Departments for Care Partners of Cognitively Impaired Patients: Protocol for a Multisite Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2022",
month="Oct",
day="20",
volume="11",
number="10",
pages="e36607",
keywords="emergency department",
keywords="cognitive impairment",
keywords="dementia",
keywords="care management",
keywords="root cause analysis",
abstract="Background: Older adults with cognitive impairment have more emergency department visits and 30-day readmissions and are more likely to die after visiting the emergency department than people without cognitive impairment. Emergency department providers frequently do not identify cognitive impairment. Use of cognitive screening tools, along with better understanding of root causes for emergency department visits, could equip health care teams with the knowledge needed to develop individually tailored care management strategies for post--emergency department care. By identifying and directly addressing patients' and informal caregivers' (or care partners') psychosocial and health care needs, such strategies could reduce the need for repeat acute care. We have used the terms ``caregiver'' and ``care partner'' interchangeably. Objective: We aimed to describe the protocol for a randomized controlled trial of a new care management intervention, the Program of Intensive Support in Emergency Departments for Care Partners of Cognitively Impaired Patients (POISED) trial, compared with usual care. We described the research design, intervention, outcome measures, data collection techniques, and analysis plans. Methods: Emergency department patients who were aged ?75 years and screened positive for cognitive impairment via either the Mini-Cog or the proxy-reported Short Informant Questionnaire on Cognitive Decline in the Elderly, with a planned discharge to home, were recruited to participate with their identified informal (family or friend) caregiver in the 2-site POISED randomized controlled trial at New York University Langone Health and Indiana University. The intervention group received 6 months of care management from the POISED Care Team of registered nurses and specialty-trained paraprofessionals, who perform root cause analyses, administer standardized assessments, provide advice, recommend appropriate referrals, and, when applicable, implement dementia-specific comorbid condition protocols. The control group received care as recommended at emergency department discharge (usual care) and were given information about resources for further cognitive assessment. The primary outcome is repeat emergency department use; secondary outcomes include caregiver activation for patient health care management, caregiver depression, anxiety, and experience of social support as important predisposing and time-varying enabling and need characteristics. Data were collected from questionnaires and patients' electronic health records. Results: Recruitment was conducted between March 2018 and May 2021. Study findings will be published in peer-reviewed journals and presented to peer audiences, decision makers, stakeholders, and other interested persons. Conclusions: The POISED intervention is a promising approach to tailoring care management based on root causes for emergency department admission of patients with cognitive impairment with the aim of reducing readmissions. This trial will provide insights for caregivers and emergency department and primary care providers on appropriate, personalized, and proactive treatment plans for older adults with cognitive impairment. The findings will be relevant to audiences concerned with quality of life for individuals with cognitive impairment and their caregivers. Trial Registration: ClinicalTrials.gov NCT03325608; https://clinicaltrials.gov/ct2/show/NCT03325608 International Registered Report Identifier (IRRID): DERR1-10.2196/36607 ",
doi="10.2196/36607",
url="https://www.researchprotocols.org/2022/10/e36607",
url="http://www.ncbi.nlm.nih.gov/pubmed/36264626"
}


@Article{info:doi/10.2196/35318,
author="Martindale-Adams, Lynn Jennifer
and Clark, Davis Carolyn
and Martin, Roxy Jessica
and Henderson, Richard Charles
and Nichols, Olivia Linda",
title="Text Messages to Support Caregivers in a Health Care System: Development and Pilot and National Rollout Evaluation",
journal="J Particip Med",
year="2022",
month="Oct",
day="17",
volume="14",
number="1",
pages="e35318",
keywords="mobile health",
keywords="mHealth",
keywords="self-care",
keywords="veterans",
keywords="family caregivers",
keywords="emotional stress",
keywords="burden of illness",
keywords="self-efficacy",
keywords="mobile phone",
abstract="Background: Although there are many interventions to support caregivers, SMS text messaging has not been used widely. Objective: In this paper, we aimed to describe development of the Department of Veterans Affairs (VA) Annie Stress Management SMS text messaging protocol for caregivers of veterans, its pilot test, and subsequent national rollout. Methods: The stress management protocol was developed with text messages focusing on education, motivation, and stress-alleviating activities based on the Resources for Enhancing All Caregivers Health (REACH) VA caregiver intervention. This protocol was then tested in a pilot study. On the basis of the pilot study results, a national rollout of the protocol was executed and evaluated. Caregivers were referred from VA facilities nationally for the pilot and national rollout. Pilot caregivers were interviewed by telephone; national rollout caregivers were sent a web-based evaluation link at 6 months. For both evaluations, questions were scored on a Likert scale ranging from completely disagree to completely agree. For both the pilot and national rollout, quantitative data were analyzed with frequencies and means; themes were identified from open-ended qualitative responses. Results: Of the 22 caregivers in the pilot study, 18 (82\%) provided follow-up data. On a 5-point scale, they reported text messages had been useful in managing stress (mean score 3.8, SD 1.1), helping them take care of themselves (mean score 3.7, SD 1.3), and making them feel cared for (mean score 4.1, SD 1.7). Texts were easy to read (mean score 4.5, SD 1.2), did not come at awkward times (mean score 2.2, SD 1.4), were not confusing (mean score 1.1, SD 0.2), and did not cause problems in responding (mean score 1.9, 1.1); however, 83\% (15/18) of caregivers did not want to request an activity when stressed. Consequently, the national protocol did not require caregivers to respond. In the national rollout, 22.17\% (781/3522) of the eligible caregivers answered the web-based survey and reported that the messages had been useful in managing stress (mean score 4.3, SD 0.8), helping them take care of themselves (mean score 4.3, SD 0.8) and loved ones (mean score 4.2, SD 0.8), and making them feel cared for (mean score 4.5, SD 0.8). Almost two-thirds (509/778, 65.4\%) of the participants tried all or most of the strategies. A total of 5 themes were identified. The messages were appreciated, helped with self-care, and made them feel less alone, looking on Annie as a friend. The caregivers reported that the messages were on target and came when they were most needed and did not want them to stop. This success has led to four additional caregiver texting protocols: bereavement, dementia behaviors and stress management, (posttraumatic stress disorder) PTSD behaviors, and taking care of you, with 7274 caregivers enrolled as of February 2022. Conclusions: Caregivers reported the messages made them feel cared for and more confident. SMS text messaging, which is incorporated into clinical settings and health care systems, may represent a low-cost way to provide useful and meaningful support to caregivers. ",
doi="10.2196/35318",
url="https://jopm.jmir.org/2022/1/e35318",
url="http://www.ncbi.nlm.nih.gov/pubmed/36251368"
}


@Article{info:doi/10.2196/35592,
author="Villalobos, Paola Jennifer
and Bull, Salyers Sheana
and Portz, Dickman Jennifer",
title="Usability and Acceptability of a Palliative Care Mobile Intervention for Older Adults With Heart Failure and Caregivers: Observational Study",
journal="JMIR Aging",
year="2022",
month="Oct",
day="6",
volume="5",
number="4",
pages="e35592",
keywords="mHealth",
keywords="older adult",
keywords="symptom",
keywords="heart failure",
keywords="palliative care",
keywords="app",
keywords="digital health",
keywords="cardiology",
keywords="heart",
keywords="Convoy-Pal",
keywords="mobile",
keywords="tablet",
keywords="smartwatch",
keywords="adult",
keywords="aging",
abstract="Background: Heart failure is a leading cause of death among older adults. Digital health can increase access to and awareness of palliative care for patients with advanced heart failure and their caregivers. However, few palliative care digital interventions target heart failure or patients' caregivers, family, and friends, termed here as the social convoy. To address this need, the Social Convoy Palliative Care (Convoy-Pal) mobile intervention was developed to deliver self-management tools and palliative care resources to older adults with advanced heart failure and their social convoys. Objective: The goal of the research was to test the acceptability and usability of Convoy-Pal among older adults with advanced heart failure and their social convoys. Methods: Convoy-Pal includes tablet-based and smartwatch tools facilitating self-management and access to palliative care resources. Older adults and social convoy caregivers completed an acceptability and usability interview via Zoom, including open-ended questions and the Mobile Application Rating Scale: User Version (uMARS). Descriptive analysis was conducted to summarize the results of open-ended feedback and self-reported acceptability and usability. Results: A total of 26 participants (16 older adults and 10 social convoy caregivers) participated in the interview. Overall, the feedback from users was good (uMARS mean 3.96/5 [SD 0.81]). Both older adults and social convoy caregivers scored information provided by Convoy-Pal the highest (mean 4.22 [SD 0.75] and mean 4.21 [SD 0.64], respectively). Aesthetics, functionality, and engagement were also perceived as acceptable (mean >3.5). Open-ended feedback resulted in 5 themes including improvements to goal setting, monitoring tools, daily check-in call feature, portal and mobile app, and convoy assessment. Conclusions: Convoy-Pal was perceived as acceptable with good usability among older adults with heart failure and their social convoy caregivers. With good acceptability, Convoy-Pal may ultimately lead to increased access to palliative care resources and facilitate self-management among older adults with heart failure and their social convoy caregivers. ",
doi="10.2196/35592",
url="https://aging.jmir.org/2022/4/e35592",
url="http://www.ncbi.nlm.nih.gov/pubmed/36201402"
}


@Article{info:doi/10.2196/40171,
author="Hong, Alicia Y.
and Shen, Kang
and Lu, Kate Huixing
and Chen, Hsiaoyin
and Gong, Yang
and Ta Park, Van
and Han, Hae-Ra",
title="A Social Media--Based Intervention for Chinese American Caregivers of Persons With Dementia: Protocol Development",
journal="JMIR Aging",
year="2022",
month="Sep",
day="29",
volume="5",
number="3",
pages="e40171",
keywords="Alzheimer disease",
keywords="dementia",
keywords="caregivers",
keywords="Chinese Americans",
keywords="mHealth intervention",
keywords="mobile health",
keywords="WeChat",
keywords="social media",
keywords="aging",
abstract="Background: Racial/ethnic minority and immigrant caregivers of persons with dementia experience high rates of psychosocial stress and adverse health outcomes. Few culturally tailored mobile health (mHealth) programs were designed for these vulnerable populations. Objective: This study reports the development of a culturally tailored mHealth program called Wellness Enhancement for Caregivers (WECARE) to improve caregiving skills, reduce distress, and improve the psychosocial well-being of Chinese American family caregivers of persons with dementia. Methods: Community-based user-centered design principles were applied in the program development. First, the structure and curriculum of the WECARE program were crafted based on existing evidence-based interventions for caregivers with input from 4 experts. Second, through working closely with 8 stakeholders, we culturally adapted evidence-based programs into multimedia program components. Lastly, 5 target users tested the initial WECARE program; their experience and feedback were used to further refine the program. Results: The resulting WECARE is a 7-week mHealth program delivered via WeChat, a social media app highly popular in Chinese Americans. By subscribing to the official WECARE account, users can receive 6 interactive multimedia articles pushed to their WeChat accounts each week for 7 weeks. The 7 major themes include (1) facts of dementia and caregiving; (2) the enhancement of caregiving skills; (3) effective communication with health care providers, care partners, and family members; (4) problem-solving skills for caregiving stress management; (5) stress reduction and depression prevention; (6) the practice of self-care and health behaviors; and (7) social support and available resources. Users also have the option of joining group chats for peer support. The WECARE program also includes a back-end database that manages intervention delivery and tracks user engagement. Conclusions: The WECARE program represents one of the first culturally tailored social media--based interventions for Chinese American caregivers of persons with dementia. It demonstrates the use of community-based user-centered design principles in developing an mHealth intervention program in underserved communities. We call for more cultural adaptation and development of mHealth interventions for immigrant and racial/ethnic minority caregivers of persons with dementia. ",
doi="10.2196/40171",
url="https://aging.jmir.org/2022/3/e40171",
url="http://www.ncbi.nlm.nih.gov/pubmed/36173667"
}


@Article{info:doi/10.2196/40241,
author="Mahmoudi, Elham
and Wu, Wenbo
and Najarian, Cyrus
and Aikens, James
and Bynum, Julie
and Vydiswaran, Vinod V. G.",
title="Identifying Caregiver Availability Using Medical Notes With Rule-Based Natural Language Processing: Retrospective Cohort Study",
journal="JMIR Aging",
year="2022",
month="Sep",
day="22",
volume="5",
number="3",
pages="e40241",
keywords="natural language processing",
keywords="caregiver",
keywords="medical notes",
keywords="Alzheimer",
keywords="dementia",
keywords="pragmatic",
keywords="aging",
keywords="care planning",
keywords="health care",
keywords="elderly care",
keywords="elderly population",
keywords="algorithm",
abstract="Background: Identifying caregiver availability, particularly for patients with dementia or those with a disability, is critical to informing the appropriate care planning by the health systems, hospitals, and providers. This information is not readily available, and there is a paucity of pragmatic approaches to automatically identifying caregiver availability and type. Objective: Our main objective was to use medical notes to assess caregiver availability and type for hospitalized patients with dementia. Our second objective was to identify whether the patient lived at home or resided at an institution. Methods: In this retrospective cohort study, we used 2016-2019 telephone-encounter medical notes from a single institution to develop a rule-based natural language processing (NLP) algorithm to identify the patient's caregiver availability and place of residence. Using note-level data, we compared the results of the NLP algorithm with human-conducted chart abstraction for both training (749/976, 77\%) and test sets (227/976, 23\%) for a total of 223 adults aged 65 years and older diagnosed with dementia. Our outcomes included determining whether the patients (1) reside at home or in an institution, (2) have a formal caregiver, and (3) have an informal caregiver. Results: Test set results indicated that our NLP algorithm had high level of accuracy and reliability for identifying whether patients had an informal caregiver (F1=0.94, accuracy=0.95, sensitivity=0.97, and specificity=0.93), but was relatively less able to identify whether the patient lived at an institution (F1=0.64, accuracy=0.90, sensitivity=0.51, and specificity=0.98). The most common explanations for NLP misclassifications across all categories were (1) incomplete or misspelled facility names; (2) past, uncertain, or undecided status; (3) uncommon abbreviations; and (4) irregular use of templates. Conclusions: This innovative work was the first to use medical notes to pragmatically determine caregiver availability. Our NLP algorithm identified whether hospitalized patients with dementia have a formal or informal caregiver and, to a lesser extent, whether they lived at home or in an institutional setting. There is merit in using NLP to identify caregivers. This study serves as a proof of concept. Future work can use other approaches and further identify caregivers and the extent of their availability. ",
doi="10.2196/40241",
url="https://aging.jmir.org/2022/3/e40241",
url="http://www.ncbi.nlm.nih.gov/pubmed/35998328"
}


@Article{info:doi/10.2196/39386,
author="Adisso, Lionel {\'E}v{\`e}hou{\'e}nou
and Taljaard, Monica
and Stacey, Dawn
and Bri{\`e}re, Nathalie
and Zomahoun, Vignon Herv{\'e} Tchala
and Durand, Jacob Pierre
and Rivest, Louis-Paul
and L{\'e}gar{\'e}, France",
title="Shared Decision-Making Training for Home Care Teams to Engage Frail Older Adults and Caregivers in Housing Decisions: Stepped-Wedge Cluster Randomized Trial",
journal="JMIR Aging",
year="2022",
month="Sep",
day="20",
volume="5",
number="3",
pages="e39386",
keywords="shared decision-making",
keywords="home care",
keywords="nursing homes",
keywords="patient engagement",
abstract="Background: Frail older adults and caregivers need support from their home care teams in making difficult housing decisions, such as whether to remain at home, with or without assistance, or move into residential care. However, home care teams are often understaffed and busy, and shared decision-making training is costly. Nevertheless, overall awareness of shared decision-making is increasing. We hypothesized that distributing a decision aid could be sufficient for providing decision support without the addition of shared decision-making training for home care teams. Objective: We evaluated the effectiveness of adding web-based training and workshops for care teams in interprofessional shared decision-making to passive dissemination of a decision guide on the proportion of frail older adults or caregivers of cognitively-impaired frail older adults reporting active roles in housing decision-making. Methods: We conducted a stepped-wedge cluster randomized trial with home care teams in 9 health centers in Quebec, Canada. Participants were frail older adults or caregivers of cognitively impaired frail older adults facing housing decisions and receiving care from the home care team at one of the participating health centers. The intervention consisted of a 1.5-hour web-based tutorial for the home care teams plus a 3.5-hour interactive workshop in interprofessional shared decision-making using a decision guide that was designed to support frail older adults and caregivers in making housing decisions. The control was passive dissemination of the decision guide. The primary outcome was an active role in decision-making among frail older adults and caregivers, measured using the Control Preferences Scale. Secondary outcomes included decisional conflict and perceptions of how much care teams involved frail older adults and caregivers in decision-making. We performed an intention-to-treat analysis. Results: A total of 311 frail older adults were included in the analysis, including 208 (66.9\%) women, with a mean age of 81.2 (SD 7.5) years. Among 339 caregivers of cognitively-impaired frail older adults, 239 (70.5\%) were female and their mean age was 66.4 (SD 11.7) years. The intervention increased the proportion of frail older adults reporting an active role in decision-making by 3.3\% (95\% CI --5.8\% to 12.4\%, P=.47) and the proportion of caregivers of cognitively-impaired frail older adults by 6.1\% (95\% CI -11.2\% to 23.4\%, P=.49). There was no significant impact on the secondary outcomes. However, the mean score for the frail older adults' perception of how much health professionals involved them in decision-making increased by 5.4 (95\% CI ?0.6 to 11.4, P=.07) and the proportion of caregivers who reported decisional conflict decreased by 7.5\% (95\% CI ?16.5\% to 1.6\%, P=.10). Conclusions: Although it slightly reduced decisional conflict for caregivers, shared decision-making training did not equip home care teams significantly better than provision of a decision aid for involving frail older adults and their caregivers in decision-making. Trial Registration: ClinicalTrials.gov NCT02592525; https://clinicaltrials.gov/show/NCT02592525 ",
doi="10.2196/39386",
url="https://aging.jmir.org/2022/3/e39386",
url="http://www.ncbi.nlm.nih.gov/pubmed/35759791"
}


@Article{info:doi/10.2196/39547,
author="Klein, Z. Ari
and Magge, Arjun
and O'Connor, Karen
and Gonzalez-Hernandez, Graciela",
title="Automatically Identifying Twitter Users for Interventions to Support Dementia Family Caregivers: Annotated Data Set and Benchmark Classification Models",
journal="JMIR Aging",
year="2022",
month="Sep",
day="16",
volume="5",
number="3",
pages="e39547",
keywords="natural language processing",
keywords="social media",
keywords="data mining",
keywords="dementia",
keywords="Alzheimer disease",
keywords="caregivers",
abstract="Background: More than 6 million people in the United States have Alzheimer disease and related dementias, receiving help from more than 11 million family or other informal caregivers. A range of traditional interventions has been developed to support family caregivers; however, most of them have not been implemented in practice and remain largely inaccessible. While recent studies have shown that family caregivers of people with dementia use Twitter to discuss their experiences, methods have not been developed to enable the use of Twitter for interventions. Objective: The objective of this study is to develop an annotated data set and benchmark classification models for automatically identifying a cohort of Twitter users who have a family member with dementia. Methods: Between May 4 and May 20, 2021, we collected 10,733 tweets, posted by 8846 users, that mention a dementia-related keyword, a linguistic marker that potentially indicates a diagnosis, and a select familial relationship. Three annotators annotated 1 random tweet per user to distinguish those that indicate having a family member with dementia from those that do not. Interannotator agreement was 0.82 (Fleiss kappa). We used the annotated tweets to train and evaluate support vector machine and deep neural network classifiers. To assess the scalability of our approach, we then deployed automatic classification on unlabeled tweets that were continuously collected between May 4, 2021, and March 9, 2022. Results: A deep neural network classifier based on a BERT (bidirectional encoder representations from transformers) model pretrained on tweets achieved the highest F1-score of 0.962 (precision=0.946 and recall=0.979) for the class of tweets indicating that the user has a family member with dementia. The classifier detected 128,838 tweets that indicate having a family member with dementia, posted by 74,290 users between May 4, 2021, and March 9, 2022---that is, approximately 7500 users per month. Conclusions: Our annotated data set can be used to automatically identify Twitter users who have a family member with dementia, enabling the use of Twitter on a large scale to not only explore family caregivers' experiences but also directly target interventions at these users. ",
doi="10.2196/39547",
url="https://aging.jmir.org/2022/3/e39547",
url="http://www.ncbi.nlm.nih.gov/pubmed/36112408"
}


@Article{info:doi/10.2196/36167,
author="Milios, Athena
and Xiong, Ting
and McEwan, Karen
and McGrath, Patrick",
title="Personality, Attitudes, and Behaviors Predicting Perceived Benefit in Online Support Groups for Caregivers: Mixed Methods Study",
journal="JMIR Nursing",
year="2022",
month="Aug",
day="18",
volume="5",
number="1",
pages="e36167",
keywords="online support groups",
keywords="personality",
keywords="support group",
keywords="online support",
keywords="peer support",
keywords="caregiver",
keywords="caregiving",
keywords="caring",
keywords="mother",
keywords="father",
keywords="usage pattern",
keywords="extraversion",
keywords="neuroticism",
keywords="neurotic",
keywords="agreeable",
keywords="benefit",
keywords="eHealth",
keywords="Canada",
keywords="North America",
keywords="parent",
keywords="neurodevelopment disorder",
keywords="attitude",
keywords="online behavior",
keywords="emotional support",
keywords="perceived benefit",
abstract="Background: Online support groups (OSGs) are distance-delivered, easily accessible health interventions offering emotional, informational, and experience-based support and companionship or network support for caregivers managing chronic mental and physical health conditions. Objective: This study aimed to examine the relative contribution of extraversion, agreeableness, neuroticism, positive attitudes toward OSGs on social networking sites, and typical past OSG use patterns in predicting perceived OSG benefit in an OSG for parents and caregivers of children with neurodevelopmental disorders. Methods: A mixed methods, longitudinal design was used to collect data from 81 parents across Canada. Attitudes toward OSGs and typical OSG use patterns were assessed using the author-developed Attitudes Toward OSGs subscale (eg, ``Online support groups are a place to get and give emotional support'') and Past Behaviors in OSGs subscale (eg, ``How often would you typically comment on posts?'') administered at baseline---before OSG membership. The personality traits of extraversion, agreeableness, and neuroticism were assessed at baseline using the Ten-Item Personality Inventory. Perceived OSG benefit was assessed using the author-developed Perceived OSG Benefit scale (eg, ``Overall, did you feel supported by other members in this group?''), administered 2 months after the initiation of OSG membership. Results: A hierarchical regression analysis found that extraversion was the only variable that significantly predicted perceived OSG benefit (R2=0.125; P<.001). Conclusions: The key suggestions for improving future OSGs were facilitating more in-depth, customized, and interactive content in OSGs. ",
doi="10.2196/36167",
url="https://nursing.jmir.org/2022/1/e36167",
url="http://www.ncbi.nlm.nih.gov/pubmed/35980741"
}


@Article{info:doi/10.2196/35072,
author="Dixon, Emma
and Anderson, Jesse
and Blackwelder, C. Diana
and Radnofsky, L. Mary
and Lazar, Amanda",
title="The Human Need for Equilibrium: Qualitative Study on the Ingenuity, Technical Competency, and Changing Strategies of People With Dementia Seeking Health Information",
journal="J Med Internet Res",
year="2022",
month="Aug",
day="11",
volume="24",
number="8",
pages="e35072",
keywords="dementia",
keywords="health information behavior",
keywords="action research",
keywords="equilibrium",
keywords="postdiagnostic experience",
keywords="mobile phone",
abstract="Background: Prior research on health information behaviors of people with dementia has primarily focused on examining the types of information exchanged by people with dementia using various web-based platforms. A previous study investigated the information behaviors of people with dementia within a month of their diagnosis. There is an empirical gap in the literature regarding the evolution of health information needs and behaviors of people with dementia as their condition progresses. Objective: Our work primarily investigated the information behaviors of people with dementia who have been living with the condition for several (4 to 26) years. We also aimed to identify their motivations for changing their information behaviors over time. Our primary research questions were as follows: how do people with dementia get informed about their condition, and why do people with dementia seek information about their condition? Methods: We adopted an action research approach by including 2 people with dementia as members of our research team. Collaboratively, we conducted 16 remote 1-hour contextual inquiry sessions with people living with mild to moderate dementia. During the study sessions, the first 40 minutes included semistructured interviews with participants concerning their information behaviors, followed by a 20-minute demonstration of their information-seeking strategies. Data from these interviews were analyzed using a constructivist grounded theory approach. Results: Participants described their information needs in terms of managing the disrupted physiological, emotional, and social aspects of their lives following a diagnosis of dementia. They used various information behaviors, including active search, ongoing search, monitoring, proxy search, information avoidance, and selective exposure. These information behaviors were not stagnant; however, they were adapted to accommodate the changing circumstances of their dementia and their lives as they worked to re-establish equilibrium to continue to engage in life while living with a degenerative neurological condition. Conclusions: Our research revealed the motivations, changing abilities, and chosen strategies of people with dementia in their search for information as their condition evolves. This knowledge can be used to develop and improve person-centered information and support services for people with dementia so that they can more easily re-establish equilibrium and continue to engage in life. ",
doi="10.2196/35072",
url="https://www.jmir.org/2022/8/e35072",
url="http://www.ncbi.nlm.nih.gov/pubmed/35969426"
}


@Article{info:doi/10.2196/35577,
author="Tremblay, Melanie
and Hamel, Christine
and Viau-Guay, Anabelle
and Giroux, Dominique",
title="User Experience of the Co-design Research Approach in eHealth: Activity Analysis With the Course-of-Action Framework",
journal="JMIR Hum Factors",
year="2022",
month="Aug",
day="9",
volume="9",
number="3",
pages="e35577",
keywords="co-design",
keywords="caregivers",
keywords="activity analysis",
keywords="course-of-action framework",
keywords="participant experience",
keywords="intrinsic description",
keywords="guidelines",
keywords="affordances",
abstract="Background: The cocreation of eHealth solutions with potential users, or co-design, can help make the solution more acceptable. However, the co-design research approach requires substantial investment, and projects are not always fruitful. Researchers have provided guidelines for the co-design approach, but these are either applicable only in specific situations or not supported by empirical data. Ways to optimize the experience of the co-design process from the point of view of the participants are also missing. Scientific literature in the co-design field generally provides an extrinsic description of the experience of participants in co-design projects. Objective: We addressed this issue by describing a co-design project and focusing on the participants' experiences looking at what was significant from their point of view. Methods: We used a qualitative situated cognitive anthropology approach for this study. Data were collected on a co-design research project that aimed to support the help-seeking process of caregivers of functionally dependent older adults. The methodology was based on the perspective of experience by Dewey and used the course-of-action theoretical and methodological framework. Data collection was conducted in 2 phases: observation of participants and recording of sessions and participant self-confrontation interviews using the session recordings. We interviewed 27\% (20/74) of the participants. We analyzed the data through nonexclusive emerging categorization of themes using the constant comparative method. Results: In total, 5 emerging themes were identified. The perception of extrinsic constraints and the effects of the situation was central and the most important theme, affecting other themes (frustrating interactions with others, learning together, destabilization, and getting personal benefits). Co-occurrences between codes allowed for a visual and narrative understanding of what was significant for the participants during this project. The results highlighted the importance of the role of the research team in preparing and moderating the sessions. They also provided a detailed description of the interactions between participants during the sessions, which is a core aspect of the co-design approach. There were positive and negative aspects of the participants' experiences during this co-design project. Reflecting on our results, we provided potential affordances to shape the experience of participants in co-design. Conclusions: Potential users are an essential component of the co-design research approach. Researchers and designers should seek to offer these users a positive and contributory experience to encourage participation in further co-design initiatives. Future research should explore how the proposed affordances influence the success of the intervention. ",
doi="10.2196/35577",
url="https://humanfactors.jmir.org/2022/3/e35577",
url="http://www.ncbi.nlm.nih.gov/pubmed/35943783"
}


@Article{info:doi/10.2196/36975,
author="Boutilier, J. Justin
and Loganathar, Priya
and Linden, Anna
and Scheer, Eleanore
and Noejovich, Sofia
and Elliott, Christian
and Zuraw, Matthew
and Werner, E. Nicole",
title="A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study",
journal="JMIR Aging",
year="2022",
month="Aug",
day="4",
volume="5",
number="3",
pages="e36975",
keywords="Alzheimer disease and related dementias",
keywords="mHealth",
keywords="caregivers",
keywords="dementia caregiving",
keywords="eHealth",
keywords="telehealth",
abstract="Background: People living with Alzheimer disease and related dementias (ADRD) require prolonged and complex care that is primarily managed by informal caregivers who face significant unmet needs regarding support for communicating and coordinating across their informal care network. To address this unmet need, we developed CareVirtue, which provides (1) the ability to invite care network members; (2) a care guide detailing the care plan; (3) a journal where care network members can document, communicate, and coordinate; (4) a shared calendar; and (5) vetted geolocated caregiver resources. Objective: This study aims to evaluate CareVirtue's feasibility based on: (1) Who used CareVirtue? (2) How did caregivers use CareVirtue? (3) How did caregivers perceive the acceptability of CareVirtue? (4) What factors were associated with CareVirtue use? Methods: We conducted a feasibility study with 51 care networks over a period of 8 weeks and used a mixed methods approach that included both quantitative CareVirtue usage data and semistructured interviews. Results: Care networks ranged from 1 to 8 members. Primary caregivers were predominantly female (38/51, 75\%), White (44/51, 86\%), married (37/51, 73\%), college educated (36/51, 71\%), and were, on average, 60.3 (SD 9.8) years of age, with 18\% (9/51) living in a rural area. CareVirtue usage varied along 2 axes (total usage and type of usage), with heterogeneity in how the most engaged care networks interacted with CareVirtue. Interviews identified a range of ways CareVirtue was useful, including practically, organizationally, and emotionally. On the Behavioral Intention Scale, 72\% (26/36) of primary caregivers reported an average score of at least 3, indicating an above average intention to use. The average was 81.8 (SD 12.8) for the System Usability Scale score, indicating ``good'' usability, and 3.4 (SD 1.0) for perceived usefulness, suggesting above average usefulness. The average confidence score increased significantly over the study duration from 7.8 in week 2 to 8.9 in week 7 (P=.005; r=0.91, 95\% CI 0.84-0.95). The following sociodemographic characteristics were associated with posting in the journal: retired (mean 59.5 posts for retired caregivers and mean 16.9 for nonretired caregivers), income (mean 13 posts for those reporting >US \$100K and mean 55.4 for those reporting <US \$100K), relationship to care recipient (mean 18.7 posts for child and mean 56.4 for partners/spouses), and living situation (mean 44.7 for those who live with the care recipient and mean 13.1 for those who do not). Older care recipients were associated with fewer posts (r=--0.33, 95\% CI --0.55 to --0.06). Conclusions: This study establishes the acceptability and feasibility of CareVirtue among ADRD care networks and highlights the importance of designing flexible, multicomponent interventions that allow care networks to tailor their engagement according to their needs. The results will be used to improve CareVirtue feasibility and acceptability in preparation for a subsequent randomized trial to test CareVirtue's effectiveness in improving caregiver outcomes. ",
doi="10.2196/36975",
url="https://aging.jmir.org/2022/3/e36975",
url="http://www.ncbi.nlm.nih.gov/pubmed/35925654"
}


@Article{info:doi/10.2196/36405,
author="Petrovic, Milica
and Bonanno, Silvia
and Landoni, Marta
and Ionio, Chiara
and Hagedoorn, Mari{\"e}t
and Gaggioli, Andrea",
title="Using the Transformative Storytelling Technique to Generate Empowering Narratives for Informal Caregivers: Semistructured Interviews, Thematic Analysis, and Method Demonstration",
journal="JMIR Form Res",
year="2022",
month="Aug",
day="2",
volume="6",
number="8",
pages="e36405",
keywords="informal care",
keywords="story",
keywords="storytelling",
keywords="stories",
keywords="patient narrative",
keywords="digital narrative",
keywords="informal caregiver",
keywords="caregiver",
keywords="caregiving",
keywords="transformative storytelling technique",
keywords="audio stories",
keywords="audio story",
keywords="digital health",
keywords="eHealth",
keywords="empower",
keywords="fiction",
keywords="life narrative",
keywords="audio narrative",
keywords="self-help",
keywords="user-centered design",
keywords="human-centered design",
keywords="innovation in mental health",
keywords="mental health",
keywords="therapy",
abstract="Background: The transformative storytelling technique is an innovative top-down approach to narrative therapy that aims to provide building blocks for creating flourishing narratives for target groups or populations. This approach acts as a facilitator for implementing the human-centered design in developing digital self-help tools for larger samples or target groups. Objective: This study applied the transformative storytelling technique, as a new approach in mental health, to develop empowering audio narratives for informal caregivers. Methods: A narrative inquiry was conducted with 17 informal caregivers (16 women and 1 man) who completed a semistructured interview, ``Caregiver Life Story,'' acquiring information about the beginning of the role, rising action, and critical point of the role. The participants' ages ranged from 41 to 84 years, with all participants providing care for at least a 6-month period. This inquiry was guided by the transformative storytelling technique, and aimed to collect data relevant to creating fictional stories based on real-life themes. Results: Twenty-five overall themes were distinguished across three a priori--set categories, providing narrative building blocks for the informal caregiver life stories. The final empowering caregiver life story was created as an example for this study, demonstrating the application of the transformative storytelling technique in an informal care context. Conclusions: The creation of empowering stories for populations or target groups in mental health care requires a unified and guided approach that will follow clear guidelines and storytelling principles. The transformative storytelling technique is a first of its kind in the mental health context, representing an initial step in enabling and supporting the creation of meaningful stories and the development of relatable, but productive, narratives. Such narratives have the potential to serve across media and digital platforms for supporting and improving well-being, and potentially triggering self-change in the target group or population. ",
doi="10.2196/36405",
url="https://formative.jmir.org/2022/8/e36405",
url="http://www.ncbi.nlm.nih.gov/pubmed/35802492"
}


@Article{info:doi/10.2196/37108,
author="Zaslavsky, Oleg
and Kaneshiro, Jasmine
and Chu, Frances
and Teng, Andrew
and Domoto-Reilly, Kimiko
and Chen, T. Annie",
title="Virtual Intervention for Caregivers of Persons With Lewy Body Dementia: Pilot Quasi-Experimental Single-Arm Study",
journal="JMIR Form Res",
year="2022",
month="Jul",
day="29",
volume="6",
number="7",
pages="e37108",
keywords="dementia",
keywords="caregiver",
keywords="internet based",
keywords="digital health",
keywords="digital intervention",
keywords="eHealth",
keywords="feasibility",
keywords="web-based",
keywords="peer support",
keywords="didactic training",
keywords="caregiving",
keywords="informal care",
keywords="spousal care",
keywords="remote intervention",
keywords="Lewy body",
keywords="Lewy bodies",
keywords="discussion forum",
keywords="discussion platform",
keywords="online support",
keywords="distress",
keywords="stress reduction",
keywords="online discussion",
keywords="support group",
keywords="discussion group",
keywords="burden",
keywords="depression",
keywords="depressive symptom",
keywords="lonely",
keywords="loneliness",
keywords="mental health",
abstract="Background: Compared to other types of dementia, family caregivers of people with Lewy body dementia (LBD) report higher stress levels and more severe depressive symptoms. Although several digital support interventions for caregivers of persons with dementia exist, few target LBD specifically or leverage a fully remote and asynchronous approach suitable for pandemic circumstances. Objective: We performed a pilot evaluation of a digital intervention designed to help caregivers of people with LBD address challenges they have experienced, with the end goal of reducing psychological distress in this population. Methods: We recruited 15 family caregivers of people with LBD to participate in the quasi-experimental, single-arm, mixed methods study titled Virtual Online Communities for Aging Life Experience--Lewy Body Dementia (VOCALE-LBD). The study offers an 8-week web-based intervention that uses a digital discussion platform and involves moderation, peer-to-peer support, didactic training, and problem-solving skill enactment. Results: Participants' baseline characteristics were the following: mean age 66 (SD 8) years; 14 of 15 (93\%) of them were female; all (15/15, 100\%) were White; and 8 (53\%) of them had at least a postgraduate degree. Throughout the intervention, participants engaged in weekly web-based discussions, generating a total of 434 posts (average 4 posts per week). Attrition was 20\% (3/15). Upon study exit, participants showed the following average improvements: 3.0 (SD 6.0) in depression, 8.3 (SD 16.7) in burden, 2.9 (SD 6.8) in stress, and 0.3 (SD 0.8) in loneliness. When looking at the proportion of participants with clinically signi?cant improvement versus those with a worsening of ?0.5 SD for each outcome, we observed net improvements of 50\% (6/12), 33\% (4/12), 25\% (3/12), and 25\% (3/12) in depression, loneliness, burden, and stress, respectively. In terms of the benefits of participation, participants reported that participation helped them ``a great deal'' to (1) improve their understanding of LBD (9/12, 75\%), (2) gain confidence in dealing with difficult behaviors of the care recipient (6/12, 50\%), and (3) improve in one's abilities to provide care to the care recipient (4/12, 33\%). Conclusions: The study generated promising feasibility and preliminary efficacy data for a low-cost, web-based intervention designed for caregivers of persons with LBD. Though the study was not powered for significance, we observed nominal average and net improvements in important psychological outcomes. Moreover, many caregivers reported that study participation helped them better understand the disease, feel more con?dent in dealing with difficult behaviors of the care recipient, and improve their ability to care for the care recipient. If validated in future studies, the intervention could be an accessible, on-demand resource for caregivers, enabling them to engage in moderated remote discussions with peers at their own convenience in terms of location, time of the day, and frequency. ",
doi="10.2196/37108",
url="https://formative.jmir.org/2022/7/e37108",
url="http://www.ncbi.nlm.nih.gov/pubmed/35904843"
}


@Article{info:doi/10.2196/39335,
author="Berridge, Clara
and Turner, R. Natalie
and Liu, Liu
and Karras, W. Sierramatice
and Chen, Amy
and Fredriksen-Goldsen, Karen
and Demiris, George",
title="Advance Planning for Technology Use in Dementia Care: Development, Design, and Feasibility of a Novel Self-administered Decision-Making Tool",
journal="JMIR Aging",
year="2022",
month="Jul",
day="27",
volume="5",
number="3",
pages="e39335",
keywords="Alzheimer disease",
keywords="advance care planning",
keywords="dyadic intervention",
keywords="technology",
keywords="remote monitoring",
keywords="artificial intelligence",
keywords="older adult",
keywords="seniors",
keywords="human-computer interaction",
keywords="aging",
keywords="elderly population",
keywords="digital tool",
keywords="educational tool",
keywords="dementia care",
keywords="ethics",
keywords="informed consent",
abstract="Background: Monitoring technologies are used to collect a range of information, such as one's location out of the home or movement within the home, and transmit that information to caregivers to support aging in place. Their surveilling nature, however, poses ethical dilemmas and can be experienced as intrusive to people living with Alzheimer disease (AD) and AD-related dementias. These challenges are compounded when older adults are not engaged in decision-making about how they are monitored. Dissemination of these technologies is outpacing our understanding of how to communicate their functions, risks, and benefits to families and older adults. To date, there are no tools to help families understand the functions of monitoring technologies or guide them in balancing their perceived need for ongoing surveillance and the older adult's dignity and wishes. Objective: We designed, developed, and piloted a communication and education tool in the form of a web application called Let's Talk Tech to support family decision-making about diverse technologies used in dementia home care. The knowledge base about how to design online interventions for people living with mild dementia is still in development, and dyadic interventions used in dementia care remain rare. We describe the intervention's motivation and development process, and the feasibility of using this self-administered web application intervention in a pilot sample of people living with mild AD and their family care partners. Methods: We surveyed 29 mild AD dementia care dyads living together before and after they completed the web application intervention and interviewed each dyad about their experiences with it. We report postintervention measures of feasibility (recruitment, enrollment, and retention) and acceptability (satisfaction, quality, and usability). Descriptive statistics were calculated for survey items, and thematic analysis was used with interview transcripts to illuminate participants' experiences and recommendations to improve the intervention. Results: The study enrolled 33 people living with AD and their care partners, and 29 (88\%) dyads completed the study (all but one were spousal dyads). Participants were asked to complete 4 technology modules, and all completed them. The majority of participants rated the tool as having the right length (>90\%), having the right amount of information (>84\%), being very clearly worded (>74\%), and presenting information in a balanced way (>90\%). Most felt the tool was easy to use and helpful, and would likely recommend it to others. Conclusions: This study demonstrated that our intervention to educate and facilitate conversation and documentation of preferences is preliminarily feasible and acceptable to mild AD care dyads. Effectively involving older adults in these decisions and informing care partners of their preferences could enable families to avoid conflicts or risks associated with uninformed or disempowered use and to personalize use so both members of the dyad can experience benefits. ",
doi="10.2196/39335",
url="https://aging.jmir.org/2022/3/e39335",
url="http://www.ncbi.nlm.nih.gov/pubmed/35896014"
}


@Article{info:doi/10.2196/36727,
author="Naunton Morgan, Bethan
and Windle, Gill
and Sharp, Rebecca
and Lamers, Carolien",
title="eHealth and Web-Based Interventions for Informal Carers of People With Dementia in the Community: Umbrella Review",
journal="J Med Internet Res",
year="2022",
month="Jul",
day="22",
volume="24",
number="7",
pages="e36727",
keywords="dementia",
keywords="Alzheimer disease",
keywords="informal",
keywords="family",
keywords="carers",
keywords="caregivers",
keywords="internet",
keywords="online",
keywords="technology",
keywords="interventions",
abstract="Background: The prevalence of dementia is increasing, and there are many associated problems that family members face as informal carers, including emotional, physical, and financial difficulties. There are benefits for a person with dementia to live at home for as long as possible, and therefore, supporting their informal carers is crucial. The growing interest in supporting carers through internet-based interventions is evidenced by the volume of systematic reviews on this topic. It is now appropriate to systematically examine this body of work and provide an overview of the literature. Objective: This umbrella review aimed to identify the most effective internet-based intervention content and delivery method to support those caring for someone with dementia living in the community. Methods: PsycINFO, Web of Science, CINAHL, MEDLINE, Cochrane Library, and PubMed were searched for systematic reviews examining the effectiveness of web-based interventions for informal carers of people with dementia. A total of 3 reviewers extracted data and evaluated the quality of the papers. To ascertain the extent to which the systematic reviews reported on the same evidence, the proportion of overlap between their included studies was calculated. Qualitative research findings were extracted and reported. Results: A total of 21 papers were included in the study. The quality of the review papers was mainly rated as low to moderate, and 10\% (2/21) of papers were of high quality. The findings suggest that multicomponent interventions were the most effective in supporting carers. These included combinations of cognitive behavioral therapy and relaxation strategies, educational resources, and online support groups. Interventions that were delivered on the web but included sessions with a personal element, such as telephone contact, showed the best results. When comparing the studies reviewed in all the review papers, a moderate overlap was noted. However, when comparing individual reviews with each other, they showed a high overlap of the included studies. Conclusions: Mixed delivery methods and intervention content showed the most effective results in supporting those caring for people with dementia. However, many papers do not separate the results for differing intervention contents or delivery; this needs to be considered when drawing conclusions. There was an overlap among the studies included in the reviews. This suggests a lack of current research on the effectiveness of web-based interventions for people caring for a person with dementia. There was also a lack of consistency in the outcome measures across all papers. Future studies can involve updating research on the effectiveness of these interventions while distinguishing between different intervention types, thus creating guidelines for the use of standardized measures to enable comparisons of intervention effects and improve the scientific quality of the overall research. Trial Registration: PROSPERO CRD42021241559; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=241559 ",
doi="10.2196/36727",
url="https://www.jmir.org/2022/7/e36727",
url="http://www.ncbi.nlm.nih.gov/pubmed/35867388"
}


@Article{info:doi/10.2196/35623,
author="Ma, E. Jessica
and Grubber, Janet
and Coffman, J. Cynthia
and Wang, Virginia
and Hastings, Nicole S.
and Allen, D. Kelli
and Shepherd-Banigan, Megan
and Decosimo, Kasey
and Dadolf, Joshua
and Sullivan, Caitlin
and Sperber, R. Nina
and Van Houtven, H. Courtney",
title="Identifying Family and Unpaid Caregivers in Electronic Health Records: Descriptive Analysis",
journal="JMIR Form Res",
year="2022",
month="Jul",
day="18",
volume="6",
number="7",
pages="e35623",
keywords="veterans",
keywords="caregivers",
keywords="electronic health record",
abstract="Background: Most efforts to identify caregivers for research use passive approaches such as self-nomination. We describe an approach in which electronic health records (EHRs) can help identify, recruit, and increase diverse representations of family and other unpaid caregivers. Objective: Few health systems have implemented systematic processes for identifying caregivers. This study aimed to develop and evaluate an EHR-driven process for identifying veterans likely to have unpaid caregivers in a caregiver survey study. We additionally examined whether there were EHR-derived veteran characteristics associated with veterans having unpaid caregivers. Methods: We selected EHR home- and community-based referrals suggestive of veterans' need for supportive care from friends or family. We identified veterans with these referrals across the 8 US Department of Veteran Affairs medical centers enrolled in our study. Phone calls to a subset of these veterans confirmed whether they had a caregiver, specifically an unpaid caregiver. We calculated the screening contact rate for unpaid caregivers of veterans using attempted phone screening and for those who completed phone screening. The veteran characteristics from the EHR were compared across referral and screening groups using descriptive statistics, and logistic regression was used to compare the likelihood of having an unpaid caregiver among veterans who completed phone screening. Results: During the study period, our EHR-driven process identified 12,212 veterans with home- and community-based referrals; 2134 (17.47\%) veteran households were called for phone screening. Among the 2134 veterans called, 1367 (64.06\%) answered the call, and 813 (38.1\%) veterans had a caregiver based on self-report of the veteran, their caregiver, or another person in the household. The unpaid caregiver identification rate was 38.1\% and 59.5\% among those with an attempted phone screening and completed phone screening, respectively. Veterans had increased odds of having an unpaid caregiver if they were married (adjusted odds ratio [OR] 2.69, 95\% CI 1.68-4.34), had respite care (adjusted OR 2.17, 95\% CI 1.41-3.41), or had adult day health care (adjusted OR 3.69, 95\% CI 1.60-10.00). Veterans with a dementia diagnosis (adjusted OR 1.37, 95\% CI 1.00-1.89) or veteran-directed care referral (adjusted OR 1.95, 95\% CI 0.97-4.20) were also suggestive of an association with having an unpaid caregiver. Conclusions: The EHR-driven process to identify veterans likely to have unpaid caregivers is systematic and resource intensive. Approximately 60\% (813/1367) of veterans who were successfully screened had unpaid caregivers. In the absence of discrete fields in the EHR, our EHR-driven process can be used to identify unpaid caregivers; however, incorporating caregiver identification fields into the EHR would support a more efficient and systematic identification of caregivers. Trial Registration: ClincalTrials.gov NCT03474380; https://clinicaltrials.gov/ct2/show/NCT03474380 ",
doi="10.2196/35623",
url="https://formative.jmir.org/2022/7/e35623",
url="http://www.ncbi.nlm.nih.gov/pubmed/35849430"
}


@Article{info:doi/10.2196/38735,
author="Young, M. Heather
and Bell, F. Janice
and Tonkikh, Orly
and Kilaberia, R. Tina
and Whitney, L. Robin
and Mongoven, M. Jennifer
and Link, M. Benjamin
and Kelly, Kathleen",
title="Implementation of a Statewide Web-Based Caregiver Resource Information System (CareNav): Mixed Methods Study",
journal="JMIR Form Res",
year="2022",
month="Jul",
day="13",
volume="6",
number="7",
pages="e38735",
keywords="online assessment",
keywords="caregiver",
keywords="technology implementation",
keywords="Consolidated Framework for Implementation Research",
keywords="CFIR",
abstract="Background: With the aging population, family caregivers provide increasingly complex and intense care for older adults and persons with disabilities. There is growing interest in developing community-based services to support family caregivers. Caregiving occurs around the clock, and caregivers face challenges in accessing community-based services at convenient times owing to the demands of care. Web-based resources hold promise for accessible real-time support. CareNav (TM), a caregiver resource information system, is a web-based platform designed to support real-time universal caregiver assessment, a record of client encounters, development of a care plan, tailored information and resource content, access to web-based caregiver resources, the capacity to track service authorization and contracts, and secure communications. The assessment includes needs and health conditions of both the care recipient and caregiver; current resources; and priorities for support, information, and referral. In 2019, the California Department of Health Care Services funded the 11 nonprofit California Caregiver Resource Centers (CRCs) to expand and improve family caregiver services and enhance CRC information technology services. Deployment of a statewide information system offered a unique opportunity to examine structures and processes facilitating implementation, providing feedback to the sites as well as lessons learned for similar projects in the future. Objective: The aim of this paper was to describe the statewide implementation of the comprehensive CareNav system using the Consolidated Framework for Implementation Research as an organizing structure for synthesizing the evaluation. Methods: This mixed methods study used two major approaches to evaluate the implementation process: a survey of all staff who completed training (n=82) and in-depth qualitative interviews with 11 CRC teams and 3 key informants (n=35). We initially analyzed interview transcripts using qualitative descriptive methods and then identified subthemes and relationships among ideas, mapping the findings to the Consolidated Framework for Implementation Research. Results: We present findings on the outer setting, inner setting, characteristics of the intervention, characteristics of the staff, and the implementation process. The critical elements for success were leadership, communication, harmonization of processes across sites, and motivation to serve clients in more accessible and convenient ways. Conclusions: These findings have implications for technology deployment in diverse community-based agencies that aspire to enhance web-based services. ",
doi="10.2196/38735",
url="https://formative.jmir.org/2022/7/e38735",
url="http://www.ncbi.nlm.nih.gov/pubmed/35830234"
}


@Article{info:doi/10.2196/33085,
author="Garnett, Anna
and Northwood, Melissa
and Ting, Justine
and Sangrar, Ruheena",
title="mHealth Interventions to Support Caregivers of Older Adults: Equity-Focused Systematic Review",
journal="JMIR Aging",
year="2022",
month="Jul",
day="8",
volume="5",
number="3",
pages="e33085",
keywords="caregivers",
keywords="older adults",
keywords="mobile health",
keywords="social determinants of health",
keywords="intervention",
keywords="mobile phone",
abstract="Background: Informal caregivers, hereafter referred to as caregivers, provide support to older adults so that they can age safely at home. The decision to become a caregiver can be influenced by individual factors, such as personal choice, or societal factors such as social determinants of health, including household income, employment status, and culture-specific gender roles. Over time, caregivers' health can be negatively affected by their caregiving roles. Although programs exist to support caregivers, the availability and appropriateness of services do not match caregivers' expressed needs. Research suggests that supportive interventions offered through mobile health (mHealth) technologies have the potential to increase caregivers' access to supportive services. However, a knowledge gap remains regarding the extent to which social determinants of health are considered in the design, implementation, and evaluation of mHealth interventions intended to support the caregivers of older adults. Objective: This study aimed to conduct a systematic review to determine how health equity is considered in the design, implementation, and evaluation of mHealth interventions for caregivers of older adults using Cochrane Equity's PROGRESS-Plus (place of residence, race, ethnicity, culture, language, occupation, gender, religion, education, social capital, socioeconomic status--plus age, disability, and sexual orientation) framework and synthesize evidence of the impacts of the identified caregiver-focused mHealth interventions. Methods: A systematic review was conducted using 5 databases. Articles published between January 2010 and June 2021 were included if they evaluated or explored the impact of mHealth interventions on the health and well-being of informal caregivers of older adults. mHealth interventions were defined as supportive services, for example, education, that caregivers of older adults accessed via mobile or wireless devices. Results: In total, 28 articles met the inclusion criteria and were included in the review. The interventions evaluated sought to connect caregivers with services, facilitate caregiving, and promote caregivers' health and well-being. The PROGRESS-Plus framework factors were mainly considered in the results, discussion, and limitations sections of the included studies. Some PROGRESS-Plus factors such as sexual orientation, religion, and occupation, received little to no consideration across any phase of the intervention design, implementation, or evaluation. Overall, the findings of this review suggest that mHealth interventions were positively received by study participants. Such interventions have the potential to reduce caregiver burden and positively affect caregivers' physical and mental health while supporting them as caregivers. The study findings highlight the importance of making support available to help facilitate caregivers' use of mHealth interventions, as well as in the use of appropriate language and text. Conclusions: The successful uptake and spread of mHealth interventions to support caregivers of older adults will depend on creating opportunities for the inclusive involvement of a broad range of stakeholders at all stages of design, implementation, and evaluation. ",
doi="10.2196/33085",
url="https://aging.jmir.org/2022/3/e33085",
url="http://www.ncbi.nlm.nih.gov/pubmed/35616514"
}


@Article{info:doi/10.2196/24376,
author="Latulippe, Karine
and Giroux, Dominique
and Guay, Manon
and Kairy, Dahlia
and Vincent, Claude
and Boivin, Katia
and Morales, Ernesto
and Obradovic, Natasa
and Provencher, V{\'e}ronique",
title="Mobile Videoconferencing for Occupational Therapists' Assessments of Patients' Home Environments Prior to Hospital Discharge: Mixed Methods Feasibility and Comparative Study",
journal="JMIR Aging",
year="2022",
month="Jul",
day="5",
volume="5",
number="3",
pages="e24376",
keywords="caregivers",
keywords="feasibility",
keywords="mixed methods",
keywords="mobile videoconferencing",
keywords="mobile phone",
keywords="occupational therapy",
keywords="discharge planning",
keywords="home assessment",
abstract="Background: Occupational therapists who work in hospitals need to assess patients' home environment in preparation for hospital discharge in order to provide recommendations (eg, technical aids) to support their independence and safety. Home visits increase performance in everyday activities and decrease the risk of falls; however, in some countries, home visits are rarely made prior to hospital discharge due to the cost and time involved. In most cases, occupational therapists rely on an interview with the patient or a caregiver to assess the home. The use of videoconferencing to assess patients' home environments could be an innovative solution to allow better and more appropriate recommendations. Objective: The aim of this study was (1) to explore the added value of using mobile videoconferencing compared with standard procedure only and (2) to document the clinical feasibility of using mobile videoconferencing to assess patients' home environments. Methods: Occupational therapists assessed home environments using, first, the standard procedure (interview),  and then, videoconferencing (with the help of a family caregiver located in patients' homes, using an electronic tablet). We used a concurrent mixed methods design. The occupational therapist's responsiveness to telehealth, time spent on assessment, patient's occupational performance and satisfaction, and major events influencing the variables were collected as quantitative data. The perceptions of occupational therapists and family caregivers regarding the added value of using this method and the nature of changes made to recommendations as a result of the videoconference (if any) were collected as qualitative data, using questionnaires and semistructured interviews. Results: Eight triads (6 occupational therapists, 8 patients, and 8 caregivers) participated. The use of mobile videoconferencing generally led occupational therapists to modify the initial intervention plan (produced after the standard interview). Occupational therapists and caregivers perceived benefits in using mobile videoconferencing (eg, the ability to provide real-time comments or feedback), and they also perceived disadvantages (eg, videoconferencing requires additional time and greater availability of caregivers). Some occupational therapists believed that mobile videoconferencing added value to assessments, while others did not. Conclusions: The use of mobile videoconferencing in the context of hospital discharge planning has raised questions of clinical feasibility. Although mobile videoconferencing provides multiple benefits to hospital discharge, including more appropriate occupational therapist recommendations, time constraints made it more difficult to perceive the added value. However, with smartphone use, interdisciplinary team involvement, and patient participation in the videoconference visit, mobile videoconferencing can become an asset to hospital discharge planning. International Registered Report Identifier (IRRID): RR2-10.2196/11674 ",
doi="10.2196/24376",
url="https://aging.jmir.org/2022/3/e24376",
url="http://www.ncbi.nlm.nih.gov/pubmed/35787486"
}


@Article{info:doi/10.2196/40147,
author="Eckardt, Peter Jens",
title="Urgency for Digital Technologies to Support Caregivers. Comment on ``Telehealth-Based Psychoeducation for Caregivers: The Family Intervention in Recent-Onset Schizophrenia Treatment Study''",
journal="JMIR Ment Health",
year="2022",
month="Jun",
day="30",
volume="9",
number="6",
pages="e40147",
keywords="schizophrenia",
keywords="family psychoeducation",
keywords="caregiver burden",
keywords="recent-onset schizophrenia",
keywords="telehealth",
doi="10.2196/40147",
url="https://mental.jmir.org/2022/6/e40147",
url="http://www.ncbi.nlm.nih.gov/pubmed/35771612"
}


@Article{info:doi/10.2196/37688,
author="Tennant, Ryan
and Allana, Sana
and Mercer, Kate
and Burns, M. Catherine",
title="Caregiver Expectations of Interfacing With Voice Assistants to Support Complex Home Care: Mixed Methods Study",
journal="JMIR Hum Factors",
year="2022",
month="Jun",
day="30",
volume="9",
number="2",
pages="e37688",
keywords="caregivers",
keywords="children",
keywords="communication",
keywords="digital",
keywords="home care",
keywords="information management",
keywords="interaction",
keywords="older adult",
keywords="technology acceptance",
keywords="voice assistant",
abstract="Background: Providing care in home environments is complex, and often the pressure is on caregivers to document information and ensure care continuity. Digital information management and communication technologies may support care coordination among caregivers. However, they have yet to be adopted in this context, partly because of issues with supporting long-term disease progression and caregiver anxiety. Voice assistant (VA) technology is a promising method for interfacing with digital health information that may aid in multiple aspects of being a caregiver, thereby influencing adoption. Understanding the expectations for VAs to support caregivers is fundamental to inform the practical development of this technology. Objective: This study explored caregivers' perspectives on using VA technology to support caregiving and inform the design of future digital technologies in complex home care. Methods: This study was part of a larger study of caregivers across North America on the design of digital health technologies to support health communication and information management in complex home care. Caregivers included parents, guardians, and hired caregivers such as personal support workers and home care nurses. Video interviews were conducted with caregivers to capture their mental models on the potential application of VAs in complex home care and were theoretically analyzed using the technology acceptance model. Interviews were followed up with Likert-scale questions exploring perspectives on other VA applications beyond participants' initial perceptions. Results: Data were collected from 22 caregivers, and 3 themes were identified: caregivers' perceived usefulness of VAs in supporting documentation, care coordination, and person-centered care; caregivers' perceived ease of use in navigating information efficiently (they also had usability concerns with this interaction method); and caregivers' concerns, excitement, expected costs, and previous experience with VAs that influenced their attitudes toward use. From the Likert-scale questions, most participants (21/22, 95\%) agreed that VAs should support prompted information recording and retrieval, and all participants (22/22, 100\%) agreed that they should provide reminders. They also agreed that VAs should support them in an emergency (18/22, 82\%)---but only for calling emergency services---and guide caregivers through tasks (21/22, 95\%). However, participants were less agreeable on VAs expressing a personality (14/22, 64\%)---concerned they would manipulate caregivers' perceptions---and listening ambiently to remind caregivers about their documentation (16/22, 73\%). They were much less agreeable about VAs providing unprompted assistance on caregiving tasks (9/22, 41\%). Conclusions: The interviews and Likert-scale results point toward the potential for VAs to support family caregivers and hired caregivers by easing their information management and health communication at home. However, beyond information interaction, the potential impact of VA personality traits on caregivers' perceptions of the care situation and the passive collection of audio data to improve user experience through context-specific interactions are critical design considerations that should be further examined. ",
doi="10.2196/37688",
url="https://humanfactors.jmir.org/2022/2/e37688",
url="http://www.ncbi.nlm.nih.gov/pubmed/35771594"
}


@Article{info:doi/10.2196/38363,
author="Bacsu, R. Juanita-Dawne
and O'Connell, E. Megan
and Cammer, Allison
and Ahmadi, Soheila
and Berger, Corinne
and Azizi, Mehrnoosh
and Gowda-Sookochoff, Rory
and Grewal, S. Karl
and Green, Shoshana
and Knight, Sheida
and Spiteri, J. Raymond",
title="Examining the Impact of COVID-19 on People With Dementia From the Perspective of Family and Friends: Thematic Analysis of Tweets",
journal="JMIR Aging",
year="2022",
month="Jun",
day="27",
volume="5",
number="2",
pages="e38363",
keywords="coronavirus 2019",
keywords="COVID-19",
keywords="Twitter",
keywords="social media",
keywords="dementia",
keywords="Alzheimer disease",
keywords="thematic analysis",
keywords="aging",
keywords="older adult",
keywords="elderly population",
keywords="caregiver",
keywords="support service",
keywords="peer support",
keywords="online health community",
abstract="Background: The COVID-19 pandemic is taking a serious toll on people with dementia. Given the rapidly evolving COVID-19 context, policymakers and practitioners require timely, evidence-informed research to address the changing needs and challenges of people with dementia and their family care partners. Objective: Using Twitter data, the objective of this study was to examine the COVID-19 impact on people with dementia from the perspective of their family members and friends. Methods: Using the Twint application in Python, we collected 6243 relevant tweets over a 15-month time frame. The tweets were divided among 11 coders and analyzed using a 6-step thematic analysis process. Results: Based on our analysis, 3 main themes were identified: (1) frustration and structural inequities (eg, denied dignity and inadequate supports), (2) despair due to loss (eg, isolation, decline, and death), and (3) resiliency, survival, and hope for the future. Conclusions: As the COVID-19 pandemic persists and new variants emerge, people with dementia and their family care partners are facing complex challenges that require timely interventions. More specifically, tackling COVID-19 challenges requires revisiting pandemic policies and protocols to ensure equitable access to health and support services, recognizing the essential role of family care partners, and providing financial assistance and resources to help support people with dementia in the pandemic. Revaluating COVID-19 policies is critical to mitigating the pandemic's impact on people with dementia and their family care partners. ",
doi="10.2196/38363",
url="https://aging.jmir.org/2022/2/e38363",
url="http://www.ncbi.nlm.nih.gov/pubmed/35667087"
}


@Article{info:doi/10.2196/34550,
author="Verstraeten, F. Helma M.
and Ziylan, Canan
and Gerritsen, L. Debby
and Huijsman, Robbert
and Nakanishi, Miharu
and Smalbrugge, Martin
and van der Steen, T. Jenny
and Zuidema, U. Sytse
and Achterberg, P. Wilco
and Bakker, M. Ton J. E.",
title="Implementing a Personalized Integrated Stepped-Care Method (STIP-Method) to Prevent and Treat Neuropsychiatric Symptoms in Persons With Dementia in Nursing Homes: Protocol for a Mixed Methods Study",
journal="JMIR Res Protoc",
year="2022",
month="Jun",
day="22",
volume="11",
number="6",
pages="e34550",
keywords="dementia",
keywords="neuropsychiatric symptoms",
keywords="caregiver",
keywords="implementation",
keywords="psychosocial intervention",
keywords="nursing homes",
abstract="Background: Neuropsychiatric symptoms occur frequently in many nursing home residents with dementia. Despite the availability of multidisciplinary guidelines, neuropsychiatric symptoms are often inadequately managed. Three proven effective methods for managing neuropsychiatric symptoms were integrated into a single intervention method: the STIP-Method, a personalized integrated stepped-care method to prevent and treat neuropsychiatric symptoms. The STIP-Method comprises 5 phases of clinical reasoning to neuropsychiatric symptoms and 4 stepped-care interventions and is supported with a web application. Objective: This study aims to identify the facilitators and barriers in the implementation of the STIP-Method in nursing homes. Methods: A mixed methods design within a participatory action research was used to implement the STIP-Method in 4 facilities of 2 Dutch nursing home organizations. In total, we aimed at participation of 160-200 persons with dementia and expected an intervention fidelity of 50\% or more, based on earlier studies regarding implementation of effective psychosocial interventions to manage neuropsychiatric symptoms. All involved managers and professionals were trained in the principles of the STIP-Method and in using the web application. An advisory board of professionals, managers, and informal caregivers in each facility supported the implementation during 21 months, including an intermission of 6 months due to the COVID-19 pandemic. In these 6-weekly advisory board meetings, 2 researchers stimulated the members to reflect on progress of the implementation by making use of available data from patient records and the web application. Additionally, the 2 researchers invited the members to suggest how to improve the implementation. Data analysis will involve (1) analysis of facilitators and barriers to the implementation derived from verbatim text reports of advisory board meetings to better understand the implementation process; (2) analysis of patient records in accordance with multidisciplinary guidelines to neuropsychiatric symptoms: personalized, interdisciplinary, and proactive management of neuropsychiatric symptoms; (3) evaluation of the web application in terms of usability scores; (4) pre- and postimplementation analysis of patient records and the web application to evaluate the impact of the STIP-Method, such as changes in neuropsychiatric symptoms and informal caregiver burden. Results: We enrolled 328 persons with dementia. Data collection started in July 2019 and ended in December 2021. The first version of this manuscript was submitted in October 2021. The first results of data analysis are expected to be published in December 2022 and final results in June 2023. Conclusions: Our study may increase understanding of facilitators and barriers to the prevention and treatment of neuropsychiatric symptoms in nursing home residents with dementia by implementing the integrated STIP-Method. The need for well-designed implementation studies is of importance to provide nursing homes with optimal tools to prevent and treat neuropsychiatric symptoms. International Registered Report Identifier (IRRID): DERR1-10.2196/34550 ",
doi="10.2196/34550",
url="https://www.researchprotocols.org/2022/6/e34550",
url="http://www.ncbi.nlm.nih.gov/pubmed/35731558"
}


@Article{info:doi/10.2196/32790,
author="Zheng, Yaguang
and Anton, Bonnie
and Rodakowski, Juleen
and Altieri Dunn, C. Stefanie
and Fields, Beth
and Hodges, C. Jacob
and Donovan, Heidi
and Feiler, Connie
and Martsolf, Grant
and Bilderback, Andrew
and Martin, C. Susan
and Li, Dan
and James, Everette Alton",
title="Associations Between Implementation of the Caregiver Advise Record Enable (CARE) Act and Health Service Utilization for Older Adults with Diabetes: Retrospective Observational Study",
journal="JMIR Aging",
year="2022",
month="Jun",
day="21",
volume="5",
number="2",
pages="e32790",
keywords="electronic health record",
keywords="caregiver",
keywords="diabetes",
keywords="hospital readmission",
keywords="emergency department utilization",
keywords="CARE Act",
keywords="EHRs",
keywords="older adults",
keywords="utilization",
abstract="Background: The Caregiver Advise Record Enable (CARE) Act is a state level law that requires hospitals to identify and educate caregivers (``family members or friends'') upon discharge. Objective: This study examined the association between the implementation of the CARE Act in a Pennsylvania health system and health service utilization (ie, reducing hospital readmission, emergency department [ED] visits, and mortality) for older adults with diabetes. Methods: The key elements of the CARE Act were implemented and applied to the patients discharged to home. The data between May and October 2017 were pulled from inpatient electronic health records. Likelihood-ratio chi-square tests and multivariate logistic regression models were used for statistical analysis. Results: The sample consisted of 2591 older inpatients with diabetes with a mean age of 74.6 (SD 7.1) years. Of the 2591 patients, 46.1\% (n=1194) were female, 86.9\% (n=2251) were White, 97.4\% (n=2523) had type 2 diabetes, and 69.5\% (n=1801) identified a caregiver. Of the 1801 caregivers identified, 399 (22.2\%) received discharge education and training. We compared the differences in health service utilization between pre- and postimplementation of the CARE Act; however, no significance was found. No significant differences were detected from the bivariate analyses in any outcomes between individuals who identified a caregiver and those who declined to identify a caregiver. After adjusting for risk factors (multivariate analysis), those who identified a caregiver (12.2\%, 219/1801) was associated with higher rates of 30-day hospital readmission than those who declined to identify a caregiver (9.9\%, 78/790; odds ratio [OR] 1.38, 95\% CI 1.04-1.87; P=.02). Significantly lower rates were detected in 7-day readmission (P=.02), as well as 7-day (P=.03) and 30-day (P=.01) ED visits, among patients with diabetes whose identified caregiver received education and training than those whose identified caregiver did not receive education and training in the bivariate analyses. However, after adjusting for risk factors, no significance was found in 7-day readmission (OR 0.53, 95\% CI 0.27-1.05; P=.07), 7-day ED visit (OR 0.63, 95\% CI 0.38-1.03; P=.07), and 30-day ED visit (OR 0.73, 95\% CI 0.52-1.02; P=.07). No significant associations were found for other outcomes (ie, 30-day readmission and 7-day and 30-day mortality) in both the bivariate and multivariate analyses. Conclusions: Our study found that the implementation of the CARE Act was associated with certain health service utilization. The identification of caregivers was associated with higher rates of 30-day hospital readmission in the multivariate analysis, whereas having identified caregivers who received discharge education was associated with lower rates of readmission and ED visit in the bivariate analysis. ",
doi="10.2196/32790",
url="https://aging.jmir.org/2022/2/e32790",
url="http://www.ncbi.nlm.nih.gov/pubmed/35727611"
}


@Article{info:doi/10.2196/32603,
author="Donnellan, James Warren
and Warren, Grace Jasmine",
title="Emotional Word Use in Informal Carers of People Living With Dementia: Linguistic Analysis of Online Discussion Forums",
journal="JMIR Aging",
year="2022",
month="Jun",
day="17",
volume="5",
number="2",
pages="e32603",
keywords="dementia care",
keywords="online forum",
keywords="emotional language",
keywords="emotional states",
keywords="dementia",
keywords="aging",
keywords="elderly population",
keywords="digital health",
keywords="online health",
abstract="Background: Informal dementia care is uniquely stressful and necessitates effective methods of identifying and understanding the needs of potentially at-risk carers so that they can be supported and sustained in their roles. One such method is examining carers' engagement in online support platforms. Research has explored emotional word use on online discussion forums as a proxy for underlying emotional functioning. We are not aware of any research that has analyzed the content of posts on discussion forums specific to carers of people living with dementia in order to examine their emotional states. Objective: We addressed the following research questions: (1) To what extent does emotional language use differ between carers of people living with dementia and noncarers? (2) To what extent does emotional language use differ between spousal and parental carers? (3) To what extent does emotional language use differ between current and former carers? Methods: We used the Linguistic Inquiry and Word Count (LIWC) program to examine emotional word use on a UK-based online forum for informal carers of people living with dementia and a discussion forum control group. Carers were separated into different subgroups for the analysis: current and former, and spousal and parental. Results: We found that carers of people living with dementia used significantly more negative, but not positive, emotion words than noncarers. Spousal carers used more emotion words overall than parental carers, specifically more negative emotion words. Former carers used more emotional words overall than current carers, specifically more positive words. Conclusions: The findings suggest that informal carers of people living with dementia may be at increased risk of negative emotional states relative to noncarers. Greater negativity in spousal carers may be explained by increased caregiver burden, whereas greater positivity in former carers may be explained by functional relief of caregiving responsibilities. The theoretical/applied relevance of these findings is discussed. ",
doi="10.2196/32603",
url="https://aging.jmir.org/2022/2/e32603",
url="http://www.ncbi.nlm.nih.gov/pubmed/35713942"
}


@Article{info:doi/10.2196/34750,
author="Fleisher, E. Jori
and Akram, Faizan
and Lee, Jeanette
and Klostermann, C. Ellen
and Hess, P. Serena
and Myrick, Erica
and Levin, Melissa
and Ouyang, Bichun
and Wilkinson, Jayne
and Hall, A. Deborah
and Chodosh, Joshua",
title="Peer Mentoring Program for Informal Caregivers of Homebound Individuals With Advanced Parkinson Disease (Share the Care): Protocol for a Single-Center, Crossover Pilot Study",
journal="JMIR Res Protoc",
year="2022",
month="May",
day="26",
volume="11",
number="5",
pages="e34750",
keywords="Parkinson disease",
keywords="carer",
keywords="caregiving",
keywords="care partner",
keywords="peer mentor",
keywords="peer support",
keywords="depression",
keywords="anxiety",
keywords="caregiver strain",
keywords="volunteer",
keywords="intervention",
abstract="Background: Homebound individuals with advanced Parkinson disease (PD) require intensive caregiving, the majority of which is provided by informal, family caregivers. PD caregiver strain is an independent risk factor for institutionalization. There are currently no effective interventions to support advanced PD caregivers. Studies in other neurologic disorders, however, have demonstrated the potential for peer mentoring interventions to improve caregiver outcomes. In the context of an ongoing trial of interdisciplinary home visits, we designed and piloted a nested trial of caregiver peer mentoring for informal caregivers of individuals with advanced PD. Objective: The aim of this study was to test the feasibility of peer mentoring for caregivers of homebound individuals with advanced PD and to evaluate its effects on anxiety, depression, and caregiver strain. Methods: This was a single-center, 16-week pilot study of caregiver peer mentoring nested within a year-long controlled trial of interdisciplinary home visits. We recruited 34 experienced former or current family caregivers who completed structured mentor training. Caregivers enrolled in the larger interdisciplinary home visit trial consented to receive 16 weeks of weekly, one-to-one peer mentoring calls with a trained peer mentor. Weekly calls were guided by a curriculum on advanced PD management and caregiver support. Fidelity to and satisfaction with the intervention were gathered via biweekly study diaries. Anxiety, depression, and caregiver strain were measured pre- and postmentoring intervention at home visits 2 and 3. Results: Enrollment and peer-mentor training began in 2018, and 65 caregivers enrolled in the overarching trial. The majority of mentors and mentees were White, female spouses or partners of individuals with PD; mentors had a mean of 8.7 (SD 6.4) years of caregiving experience, and 33 mentors were matched with at least 1 mentee. Conclusions: This is the first study of caregiver peer mentoring in PD and may establish an adaptable and sustainable model for disease-specific caregiver interventions in PD and other neurodegenerative diseases. Trial Registration: ClinicalTrials.gov NCT03189459; http://clinicaltrials.gov/ct2/show/NCT03189459 International Registered Report Identifier (IRRID): DERR1-10.2196/34750 ",
doi="10.2196/34750",
url="https://www.researchprotocols.org/2022/5/e34750",
url="http://www.ncbi.nlm.nih.gov/pubmed/35481819"
}


@Article{info:doi/10.2196/31486,
author="Read, A. Emily
and Gagnon, A. Danie
and Donelle, Lorie
and Ledoux, Kathleen
and Warner, Grace
and Hiebert, Brad
and Sharma, Ridhi",
title="Stakeholder Perspectives on In-home Passive Remote Monitoring to Support Aging in Place in the Province of New Brunswick, Canada: Rapid Qualitative Investigation",
journal="JMIR Aging",
year="2022",
month="May",
day="11",
volume="5",
number="2",
pages="e31486",
keywords="aging in place",
keywords="home care",
keywords="older adults",
keywords="passive remote monitoring",
abstract="Background: The province of New Brunswick (NB) has one of the oldest populations in Canada, providing an opportunity to develop and test innovative strategies to address the unique health challenges faced by older adults. Passive remote monitoring technology has the potential to support independent living among older adults. Limited research has examined the benefits of and barriers to the adoption of this technology among community-dwelling older adults. Objective: This study aimed to explore perceptions of in-home passive remote monitoring technology designed to support aging in place from the perspective of older adults, their family or friend caregivers, social workers, and government decision-makers in the province of NB, Canada. Methods: Between October 2018 and March 2020, a rapid qualitative investigation of 28 one-on-one interviews was conducted in person or via telephone. Participants included 2 home support services clients and 11 family or friend caregivers who had used passive remote monitoring technology in their homes; 8 social workers who had worked as case managers for home support services clients; and 7 individuals who were key government decision-makers in the adoption, policy development, and use of the technology in the province of NB. The interviews focused on the following topics: decision to adopt the passive remote monitoring system, barriers to adopting the passive remote monitoring system, benefits of the passive remote monitoring system, impact on client health outcomes, and privacy concerns. The interviews were audio recorded, transcribed, and analyzed by a team of 6 researchers. Data analysis was conducted using a rapid assessment process approach that included matrix analysis. Results: Participants reported that the use of the remote monitoring system allowed older adults to live at home longer and provided caregiver relief. Stakeholders were invested in meeting the home support (home care) needs of older adults. However, when it came to the use of remote monitoring, there was a lack of consensus about which clients it was well-suited for and the role that social workers should play in informing clients and caregivers about the service (role ambiguity, gatekeeping, and perceived conflicts of interest). Conclusions: Our findings highlight many benefits and challenges of the adoption of passive remote monitoring for clients, their family or friend caregivers, and public provincial health and social services systems. Passive remote monitoring is a valuable tool that can provide support to older adults and their family or friend caregivers when it is a good fit with client needs. Further work is needed in NB to increase public and social workers' awareness of the service and its benefits. ",
doi="10.2196/31486",
url="https://aging.jmir.org/2022/2/e31486",
url="http://www.ncbi.nlm.nih.gov/pubmed/35544304"
}


@Article{info:doi/10.2196/35847,
author="Cha, Jinhee
and Peterson, M. Colleen
and Millenbah, N. Ashley
and Louwagie, Katie
and Baker, G. Zachary
and Shah, Ayush
and Jensen, J. Christine
and Gaugler, E. Joseph",
title="Delivering Personalized Recommendations to Support Caregivers of People Living With Dementia: Mixed Methods Study",
journal="JMIR Aging",
year="2022",
month="May",
day="3",
volume="5",
number="2",
pages="e35847",
keywords="caregivers",
keywords="caregiving",
keywords="Alzheimer",
keywords="dementia",
keywords="intervention",
keywords="COVID-19",
abstract="Background: Estimates suggest that 6.2 million Americans aged ?65 years are living with Alzheimer dementia in 2021, and by 2060, this number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers of persons with Alzheimer disease or related dementia and support resources for both people living with dementia and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, Care to Plan (CtP), a web-based tool for caregivers of people living with dementia, was developed to provide tailored support recommendations to dementia caregivers. Objective: The aim of this study is to formally explore the feasibility, acceptability, and utility of CtP for 20 family members of people living with dementia within a health system over a 1-month time period using a mixed methods parallel convergent design. Methods: A moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation, where 20 caregivers who were family members of people living with dementia were enrolled. The web-based CtP tool was used by caregivers and facilitated by a health care professional (ie, a senior care navigator [SCN]). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with an SCN. Following the 21-item review checklist, semistructured telephone interviews, which included 18 open-ended questions, focused on the facilitators of and barriers to CtP implementation and recommendations for future implementation. Results: Quantitative results suggested that 85\% (17/20) of caregivers indicated that CtP was helpful and 90\% (18/20) would recommend CtP to someone in a similar situation. The qualitative analysis identified 4 themes regarding facilitators of and barriers to implementation: caregiver factors, SCN factors, CtP tool system factors, and recommendations and resources factors. Conclusions: CtP was found to be not only feasible but also a valuable tool for caregivers seeking resources for themselves and their people living with dementia. Long-term evaluation findings aim to generate results on how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers of people living with dementia over an extended period. ",
doi="10.2196/35847",
url="https://aging.jmir.org/2022/2/e35847",
url="http://www.ncbi.nlm.nih.gov/pubmed/35503650"
}


@Article{info:doi/10.2196/32322,
author="Shin, H. Marlena
and McLaren, Jaye
and Ramsey, Alvin
and Sullivan, L. Jennifer
and Moo, Lauren",
title="Improving a Mobile Telepresence Robot for People With Alzheimer Disease and Related Dementias: Semistructured Interviews With Stakeholders",
journal="JMIR Aging",
year="2022",
month="May",
day="3",
volume="5",
number="2",
pages="e32322",
keywords="mild cognitive impairment",
keywords="socially assistive robot",
keywords="robot technology",
keywords="caregiver support",
keywords="gerontology",
keywords="aging in place",
keywords="qualitative research",
keywords="mobile phone",
abstract="Background: By 2050, nearly 13 million Americans will have Alzheimer disease and related dementias (ADRD), with most of those with ADRD or mild cognitive impairment (MCI) receiving home care. Mobile telepresence robots may allow persons with MCI or ADRD to remain living independently at home and ease the burden of caregiving. The goal of this study was to identify how an existing mobile telepresence robot can be enhanced to support at-home care of people with MCI or ADRD through key stakeholder input. Objective: The specific aims were to assess what applications should be integrated into the robot to further support the independence of individuals with MCI or ADRD and understand stakeholders' overall opinions about the robot. Methods: We conducted in-person interviews with 21 stakeholders, including 6 people aged >50 years with MCI or ADRD living in the community, 9 family caregivers of people with MCI or ADRD, and 6 clinicians who work with the ADRD population. Interview questions about the robot focused on technology use, design and functionality, future applications to incorporate, and overall opinions. We conducted a thematic analysis of the data obtained and assessed the patterns within and across stakeholder groups using a matrix analysis technique. Results: Overall, most stakeholders across groups felt positively about the robot's ability to support individuals with MCI or ADRD and decrease caregiver burden. Most ADRD stakeholders felt that the greatest benefits would be receiving help in emergency cases and having fewer in-person visits to the doctor's office. Caregivers and clinicians also noted that remote video communication with their family members using the robot was valuable. Adding voice commands and 1-touch lifesaving or help buttons to the robot were the top suggestions offered by the stakeholders. The 4 types of applications that were suggested included health-related alerts; reminders; smart-home--related applications; and social, entertainment, or well-being applications. Stakeholders across groups liked the robot's mobility, size, interactive connection, and communication abilities. However, stakeholders raised concerns about their physical stability and size for individuals living in smaller, cluttered spaces; screen quality for those with visual impairments; and privacy or data security. Conclusions: Although stakeholders generally expressed positive opinions about the robot, additional adaptations were suggested to strengthen functionality. Adding applications and making improvements to the design may help mitigate concerns and better support individuals with ADRD to live independently in the community. As the number of individuals living with ADRD in the United States increases, mobile telepresence robots are a promising way to support them and their caregivers. Engaging all 3 stakeholder groups in the development of these robots is a critical first step in ensuring that the technology matches their needs. Integrating the feedback obtained from our stakeholders and evaluating their effectiveness will be important next steps in adapting telepresence robots. ",
doi="10.2196/32322",
url="https://aging.jmir.org/2022/2/e32322",
url="http://www.ncbi.nlm.nih.gov/pubmed/35503518"
}


@Article{info:doi/10.2196/35625,
author="Perales-Puchalt, Jaime
and Acosta-Rull{\'a}n, Mariola
and Ram{\'i}rez-Mantilla, Mariana
and Espinoza-Kissell, Paul
and Vidoni, Eric
and Niedens, Michelle
and Ellerbeck, Edward
and Hinton, Ladson
and Loera, Linda
and Ram{\'i}rez, Susana A.
and Lara, Esther
and Watts, Amber
and Williams, Kristine
and Resendez, Jason
and Burns, Jeffrey",
title="A Text Messaging Intervention to Support Latinx Family Caregivers of Individuals With Dementia (CuidaTEXT): Development and Usability Study",
journal="JMIR Aging",
year="2022",
month="Apr",
day="28",
volume="5",
number="2",
pages="e35625",
keywords="Latinx individuals",
keywords="mHealth",
keywords="dementia",
keywords="caregiving",
abstract="Background: Latinx family caregivers of individuals with dementia face many barriers to caregiver support access. Interventions to alleviate these barriers are urgently needed. Objective: This study aimed to describe the development of CuidaTEXT, a tailored SMS text messaging intervention to support Latinx family caregivers of individuals with dementia. Methods: CuidaTEXT is informed by the stress process framework and social cognitive theory. We developed and refined CuidaTEXT using a mixed methods approach that included thematic analysis and descriptive statistics. We followed 6 user-centered design stages, namely, the selection of design principles, software vendor collaboration, evidence-based foundation, caregiver and research and clinical advisory board guidance, sketching and prototyping, and usability testing of the prototype of CuidaTEXT among 5 Latinx caregivers. Results: CuidaTEXT is a bilingual 6-month-long SMS text messaging--based intervention tailored to caregiver needs that includes 1-3 daily automatic messages (n=244) about logistics, dementia education, self-care, social support, end of life, care of the person with dementia, behavioral symptoms, and problem-solving strategies; 783 keyword-driven text messages for further help with the aforementioned topics; live chat interaction with a coach for further help; and a 19-page reference booklet summarizing the purpose and functions of the intervention. The 5 Latinx caregivers who used the prototype of CuidaTEXT scored an average of 97 out of 100 on the System Usability Scale. Conclusions: CuidaTEXT's prototype demonstrated high usability among Latinx caregivers. CuidaTEXT's feasibility is ready to be tested. ",
doi="10.2196/35625",
url="https://aging.jmir.org/2022/2/e35625",
url="http://www.ncbi.nlm.nih.gov/pubmed/35482366"
}


@Article{info:doi/10.2196/32492,
author="Mueser, T. Kim
and Achtyes, D. Eric
and Gogate, Jagadish
and Mancevski, Branislav
and Kim, Edward
and Starr, Lynn H.",
title="Telehealth-Based Psychoeducation for Caregivers: The Family Intervention in Recent-Onset Schizophrenia Treatment Study",
journal="JMIR Ment Health",
year="2022",
month="Apr",
day="15",
volume="9",
number="4",
pages="e32492",
keywords="schizophrenia",
keywords="family psychoeducation",
keywords="caregiver burden",
keywords="recent-onset schizophrenia",
keywords="telehealth",
abstract="Background: Schizophrenia is a lifelong illness that requires long-term treatment and caregiving. Family psychoeducation (FP) has been shown to lessen caregiver burden, improve caregiver functioning, and improve outcomes in patients. However, the impact of FP delivered specifically to caregivers on patient outcomes has not been well explored, particularly for early schizophrenia. Furthermore, there is a lack of research examining the benefits of telehealth-based psychoeducation for caregivers on either patient or caregiver outcomes. Objective: The Family Intervention in Recent-Onset Schizophrenia Treatment (FIRST) study is a randomized controlled trial of patients with schizophrenia spectrum disorders and their caregivers, which is designed to evaluate the effect of telehealth-based, caregiver-focused, study-provided psychoeducation versus usual care (UC) on patient treatment failure (TF). The impact of study-provided psychoeducation on caregiver burden is also investigated. Methods: Eligible patients and their designated caregivers were randomly assigned to either the study-provided psychoeducation (?16 sessions of telehealth-based psychoeducation over 6 months) or UC group, stratified by antipsychotic treatment (paliperidone palmitate or oral antipsychotic). The major TF events (ie, psychiatric hospitalization or intervention, arrest or incarceration, and suicide attempts) were assessed at 3, 6, and 12 months after baseline. A proportional means model using mean cumulative function was used to assess between-group differences in the mean cumulative number of TF events over 12 months. Caregiver burden was assessed using the Involvement Evaluation Questionnaire and 12-item Short Form Health Survey. Results: A total of 148 pairs of participants were enrolled in the study, of whom 96 (64.9\%) patients and 94 (63.5\%) caregivers completed the 12-month follow-up. The mean number of sessions in the study-provided psychoeducation group was 7.7 (SD 5.9). No differences were observed between the study-provided psychoeducation and UC groups in patient outcomes (rates of TF: 70\% vs 67\%; P=.90) or measures of caregiver burden (assessment of caregiver distress and physical and mental health). However, post hoc analyses revealed lower relapse rates in patients who received paliperidone palmitate than in those who received oral antipsychotics at all time points. Although the FIRST study did not meet the primary end point, several key lessons were identified to inform future caregiver-focused, telehealth-based FP interventions. Lack of study-provided psychoeducation, focus on caregiver-only intervention, difficulties with enrollment, and caregiver--treatment team coordination may have affected the outcomes of the FIRST study. Conclusions: Key insights from the FIRST study suggest the potential importance of supporting sufficient caregiver engagement; communication between clinicians, patients, and family members regarding treatment plans; and solidifying the relationship between clinicians providing psychoeducation to the caregiver and patient treatment team. Trial Registration: ClinicalTrials.gov NCT02600741; http://clinicaltrials.gov/ct2/show/NCT02600741 ",
doi="10.2196/32492",
url="https://mental.jmir.org/2022/4/e32492",
url="http://www.ncbi.nlm.nih.gov/pubmed/35436231"
}


@Article{info:doi/10.2196/28504,
author="Ozluk, Pelin
and Cobb, Rebecca
and Hoots, Alyson
and Sylwestrzak, Malgorzata",
title="Association Between Mobile App Use and Caregivers' Support System, Time Spent on Caregiving, and Perceived Well-being: Survey Study From a Large Employer",
journal="J Med Internet Res",
year="2022",
month="Apr",
day="11",
volume="24",
number="4",
pages="e28504",
keywords="caregiving",
keywords="mobile app",
keywords="mobile phone",
abstract="Background: Mobile technology to address caregiver needs has been on the rise. There is limited evidence of effectiveness of such technologies on caregiver experiences. Objective: This study evaluates the effectiveness of ianacare, a mobile app, among employees of a large employer. ianacare mobilizes personal social circles to help with everyday tasks. Through the use of ianacare, we evaluate the associations between coordinating caregiving tasks among a caregiver's personal support network and outcomes related to the caregiver's support system, time use, perceived productivity, and perceived health and well-being. Caregiver tasks include tasks such as meal preparation, respite care, pet care, and transportation. Time use is the measure of a caregiver's time spent on caregiving tasks and how much time they had to take off from work to attend planned or unplanned caregiving tasks. Methods: We conducted 2 surveys to assess within-participant changes in outcomes for the unpaid, employed, caregivers after 6 weeks of using the mobile app (n=176) between March 30, 2020, and May 11, 2020. The surveys contained questions in three domains: the caregiver's support system, time use and perceived productivity, and perceived health and well-being. The results of the linear probability models are presented below. Results: App use was significantly associated with decreasing the probability of doing most caregiving tasks alone by 9.1\% points (SE 0.04; P=.01) and increasing the probability of at least one person helping the primary caregiver by 8.0\% points (SE 0.035; P=.02). App use was also associated with improving the time use of the primary caregiver who took significantly less time off work to attend to caregiving duties by 12.5\% points (SE 0.04; P=.003) and decreased the probability of spending more than 30 hours weekly on caregiving by 9.1\% points (SE 0.04; P=.02). Additional findings on the positive impact of the app included a decrease in the probability of reporting feeling overwhelmed by caregiving tasks by 12.5\% points (SE 0.04; P=.003) and a decrease in the probability of reporting negative health effects by 6.8\% points (SE 0.04; P=.07) because of caregiving. Although subjects reported that COVID-19 increased their stress attributed to caregiving and prevented them from requesting help for some caregiving tasks, using the app was still associated with improvements in receiving help and lessening of the negative effects of caregiving on the caregivers. Conclusions: App use was associated with improvements in 7 of 11 caregiver outcomes across three main categories: their support system, time spent on caregiving, and perceived health and well-being. These findings provide encouraging evidence that the mobile app can significantly reduce caregiver burden by leveraging a caregiver's support network despite the additional challenges brought by COVID-19 on caregivers. ",
doi="10.2196/28504",
url="https://www.jmir.org/2022/4/e28504",
url="http://www.ncbi.nlm.nih.gov/pubmed/35404266"
}


@Article{info:doi/10.2196/30877,
author="Coles, Theresa
and Lucas, Nicole
and Daniell, Erin
and Sullivan, Caitlin
and Wang, Ke
and Olsen, M. Jennifer
and Shepherd-Banigan, Megan",
title="Prioritizing Support Offered to Caregivers by Examining the Status Quo and Opportunities for Enhancement When Using Web-Based Self-reported Health Questionnaires: Descriptive Qualitative Study",
journal="JMIR Form Res",
year="2022",
month="Apr",
day="8",
volume="6",
number="4",
pages="e30877",
keywords="caregiver",
keywords="web-based questionnaires",
keywords="self-report questionnaires",
keywords="caregiver outcomes",
keywords="intervention technology",
keywords="patient-reported outcome measures",
abstract="Background: The Rosalynn Carter Institute for Caregivers (RCI) offers evidence-based interventions to promote caregivers' health and well-being. Trained coaches regularly meet with caregivers to offer education and instructions to improve caregiver health, build skill sets, and increase resilience. Two of these interventions, RCI Resources for Enhancing Alzheimer's Caregiver Health (REACH) and Operation Family Caregiver (OFC), use a set of caregiver-reported questionnaires to monitor caregivers' health status and needs. Objective: This study aims to describe how web-based assessment questionnaires are used to identify and monitor caregiver status in the RCI REACH and OFC programs and outlines perceived enhancements to the web-based system that could support caregiver-coach encounters by directing priorities. Methods: This was a descriptive, qualitative study. Data were collected via semistructured interviews with caregivers and coaches in the RCI REACH and OFC programs from July 2020 to October 2020. During the interviews, participants were asked to describe how the assessment questionnaires were used to inform caregiver-coach encounters, perceived usefulness of enhancements to web-based display, and preference for the structure of score results. The interviews were recorded, transcribed, and coded using structural and interpretive codes from a structured codebook. Qualitative content analysis was used to identify themes and summarize the results. Results: A total of 25 caregivers (RCI REACH: 13/25, 52\%; OFC: 12/25, 48\%) and 11 coaches (RCI REACH: 5/11, 45\%; OFC: 6/11, 55\%) were interviewed. Most caregivers indicated that the assessment questions were relevant to their caregiving experience. Some caregivers and coaches indicated that they thought the assessment should be administered multiple times throughout the program to evaluate the caregiver progress. Overall, caregivers did not want their scores to be compared with those of other caregivers, and there was heterogeneity in how caregivers preferred to view their results at the question or topic level. Coaches were uncertain as to which and how much of the results from the self-reported questionnaires should be shared with caregivers. Overall, the results were very similar, regardless of program affiliation (RCI REACH vs OFC). Conclusions: Web-based and procedural enhancements were identified to enrich caregiver-coach encounters. New and enhanced strategies for using web-based assessment questionnaires to direct priorities in the caregiver-coach encounters included integrating figures showing caregiver progress at the individual caregiver level, ability to toggle results through different figures focused on individual versus aggregate results, and support for interpreting scores. The results of this qualitative study will drive the next steps for RCI's web-based platform and expand on current standards for administering self-reported questionnaires in clinical practice settings. ",
doi="10.2196/30877",
url="https://formative.jmir.org/2022/4/e30877",
url="http://www.ncbi.nlm.nih.gov/pubmed/35394436"
}


@Article{info:doi/10.2196/33863,
author="Werner, E. Nicole
and Brown, C. Janetta
and Loganathar, Priya
and Holden, J. Richard",
title="Quality of Mobile Apps for Care Partners of People With Alzheimer Disease and Related Dementias: Mobile App Rating Scale Evaluation",
journal="JMIR Mhealth Uhealth",
year="2022",
month="Mar",
day="29",
volume="10",
number="3",
pages="e33863",
keywords="Alzheimer disease and related dementias",
keywords="mobile app",
keywords="mHealth",
keywords="caregivers",
keywords="dementia caregiving",
keywords="eHealth",
keywords="telehealth",
keywords="mobile phone",
abstract="Background: Over 11 million care partners in the United States who provide care to people living with Alzheimer disease and related dementias (ADRD) cite persistent and pervasive unmet needs related to their caregiving role. The proliferation of mobile apps for care partners has the potential to meet care partners' needs, but the quality of apps is unknown. Objective: This study aims to evaluate the quality of publicly available apps for care partners of people living with ADRD and identify design features of low- and high-quality apps to guide future research and user-centered app development. Methods: We searched the US Apple App and Google Play stores with the criteria that included apps needed to be available in the US Google Play or Apple App stores, accessible to users out of the box, and primarily intended for use by an informal (family or friend) care partner of a person living with ADRD. We classified and tabulated app functionalities. The included apps were then evaluated using the Mobile App Rating Scale (MARS) using 23 items across 5 dimensions: engagement, functionality, aesthetics, information, and subjective quality. We computed descriptive statistics for each rating. To identify recommendations for future research and app development, we categorized rater comments on score-driving factors for each MARS rating item and what the app could have done to improve the item score. Results: We evaluated 17 apps. We found that, on average, apps are of minimally acceptable quality. Functionalities supported by apps included education (12/17, 71\%), interactive training (3/17, 18\%), documentation (3/17, 18\%), tracking symptoms (2/17, 12\%), care partner community (3/17, 18\%), interaction with clinical experts (1/17, 6\%), care coordination (2/17, 12\%), and activities for the person living with ADRD (2/17, 12\%). Of the 17 apps, 8 (47\%) had only 1 feature, 6 (35\%) had 2 features, and 3 (18\%) had 3 features. The MARS quality mean score across apps was 3.08 (SD 0.83) on the 5-point rating scale (1=inadequate to 5=excellent), with apps scoring highest on average on functionality (mean 3.37, SD 0.99) and aesthetics (mean 3.24, SD 0.92) and lowest on average on information (mean 2.95, SD 0.95) and engagement (mean 2.76, SD 0.89). The MARS subjective quality mean score across apps was 2.26 (SD 1.02). Conclusions: We identified apps whose mean scores were more than 1 point below minimally acceptable quality, whereas some were more than 1 point above. Many apps had broken features and were rated as below acceptable for engagement and information. Minimally acceptable quality is likely to be insufficient to meet care partner needs. Future research should establish minimum quality standards across dimensions for care partner mobile apps. Design features of high-quality apps identified in this study can provide the foundation for benchmarking these standards. ",
doi="10.2196/33863",
url="https://mhealth.jmir.org/2022/3/e33863",
url="http://www.ncbi.nlm.nih.gov/pubmed/35348467"
}


@Article{info:doi/10.2196/31552,
author="Albers, A. Elizabeth
and Mikal, Jude
and Millenbah, Ashley
and Finlay, Jessica
and Jutkowitz, Eric
and Mitchell, Lauren
and Horn, Brenna
and Gaugler, E. Joseph",
title="The Use of Technology Among Persons With Memory Concerns and Their Caregivers in the United States During the COVID-19 Pandemic: Qualitative Study",
journal="JMIR Aging",
year="2022",
month="Mar",
day="17",
volume="5",
number="1",
pages="e31552",
keywords="social isolation",
keywords="dementia",
keywords="caregiving - informal",
keywords="aging in place",
keywords="caregivers",
keywords="aging",
keywords="elderly",
keywords="pandemic",
keywords="COVID-19",
keywords="mental health",
keywords="technology use",
keywords="health technology",
abstract="Background: Stay-at-home orders and other public health measures designed to mitigate the spread of COVID-19 have increased isolation among persons with memory concerns (PWMCs: individuals diagnosed with cognitive impairment or Alzheimer disease or related dementias). The pandemic has also exacerbated challenges for family members who care for PWMCs. Although technology has demonstrated the potential to improve the social connections and mental health of PWMCs and their family caregivers (CGs), previous research shows that older adults may be reluctant to adopt new technologies. Objective: We aimed to understand why and how some PWMCs and their CGs altered their use of mainstream technology, such as smartphones and fitness trackers, and assistive technology to adapt to lifestyle changes (eg, increased isolation) during the COVID-19 pandemic. Methods: Using data collected in 20 qualitative interviews from June to August 2020 with 20 PWMCs and family CG dyads, we assessed changes in and barriers to everyday technology use following the implementation of COVID-19 mitigation strategies in the United States. Zoom videoconferencing was utilized to conduct the interviews to protect the health of the participants who were primarily older adults. Results: Using qualitative thematic analysis, we identified 3 themes that explained motivations for using technology during a pandemic: (1) maintaining social connections, (2) alleviating boredom, and (3) increasing CG respite. Results further revealed lingering barriers to PWMC and CG adoption of technologies, including: (1) PWMC dependence upon CGs, (2) low technological literacy, and (3) limitations of existing technology. Conclusions: This in-depth investigation suggests that technology can provide PWMCs with more independence and offer CGs relief from CG burden during periods of prolonged isolation. ",
doi="10.2196/31552",
url="https://aging.jmir.org/2022/1/e31552",
url="http://www.ncbi.nlm.nih.gov/pubmed/35134748"
}


@Article{info:doi/10.2196/35687,
author="Allen, A. Nancy
and Litchman, L. Michelle
and Chamberlain, James
and Grigorian, G. Ernest
and Iacob, Eli
and Berg, A. Cynthia",
title="Continuous Glucose Monitoring Data Sharing in Older Adults With Type 1 Diabetes: Pilot Intervention Study",
journal="JMIR Diabetes",
year="2022",
month="Mar",
day="16",
volume="7",
number="1",
pages="e35687",
keywords="older adults",
keywords="type 1 diabetes",
keywords="caregiver",
keywords="CGM",
keywords="data sharing",
keywords="mobile phone",
abstract="Background: Family members or friends (care partners [CPs]) of older adults with type 1 diabetes (T1DM) regularly become part of the diabetes care team, but they often lack knowledge about how to become involved to prevent hypo- and hyperglycemia. Continuous glucose monitoring (CGM) allows a person with diabetes to see their glucose levels continuously and to receive predictive alerts. A smartphone data-sharing app called the Follow app allows the person with diabetes to share continuous glucose numbers with others and to receive predictive alerts of impending hypo- and hyperglycemia. However, there are barriers to sharing this continuous glucose level data with CPs. Objective: This study aimed to address the barriers to sharing CGM data. Our objective was to examine the feasibility of using CGM with the Follow app and a data-sharing intervention called SHARE plus in older adults with T1DM and their CPs. SHARE plus includes dyadic communication strategies, problem-solving strategies, and action planning to facilitate CGM data sharing. Methods: Older adults with T1DM (n=20) and their CPs (n=20) received the SHARE plus intervention at baseline. People with diabetes wore the CGM for 12 weeks while sharing their glucose data using the Follow app with CPs. Feasibility data were analyzed using descriptive statistics. Results: The SHARE plus intervention was feasible and was associated with high self-reported satisfaction for people with diabetes and their CPs as well as high adherence to CGM (mean 96\%, SD 6.8\%). Broad improvements were shown in the diabetes-related quality of life through the use of CGM in people with diabetes and their CPs. Although the majority of people with diabetes (11/20, 55\%) were willing to share hyperglycemia data, several chose not to. The majority of people with diabetes (14/20, 70\%) were willing to talk about glucose numbers with a CP. Conclusions: Older adults with T1DM and their CPs identified having someone else aware of glucose levels and working together with a partner on diabetes self-management as positive aspects of the use of the SHARE plus intervention. Clinicians can use these results to provide data sharing coaching in older adults and their CPs. ",
doi="10.2196/35687",
url="https://diabetes.jmir.org/2022/1/e35687",
url="http://www.ncbi.nlm.nih.gov/pubmed/35293868"
}


@Article{info:doi/10.2196/32516,
author="Gilson, Aaron
and Gassman, Michele
and Dodds, Debby
and Lombardo, Robin
and Ford II, H. James
and Potteiger, Michael",
title="Refining a Digital Therapeutic Platform for Home Care Agencies in Dementia Care to Elicit Stakeholder Feedback: Focus Group Study With Stakeholders",
journal="JMIR Aging",
year="2022",
month="Mar",
day="2",
volume="5",
number="1",
pages="e32516",
keywords="dementia",
keywords="technology",
keywords="mobile app",
keywords="home care",
keywords="focus groups",
keywords="qualitative research",
keywords="digital therapeutics",
keywords="value-based care",
keywords="aging in place",
keywords="caregiving",
abstract="Background: Persons living with dementia require increasing levels of care, and the care model has evolved. The Centers for Medicare and Medicaid Services is transitioning long-term care services from institutional care to home- or community-based services, including reimbursement for nonclinical services. Although home care companies are positioned to handle this transition, they need innovative solutions to address the special challenges posed by caring for persons living with dementia. To live at home longer, these persons require support from formal caregivers (FCGs; ie, paid professionals), who often lack knowledge of their personal histories and have high turnover, or informal caregivers (eg, family or friends), who may have difficulty coping with behavioral and psychological symptoms of dementia. The Generation Connect platform was developed to support these individuals and their formal and informal caregivers. In preliminary studies, the platform improved mood and influenced caregiver satisfaction. To enhance platform effectiveness, Generation Connect received a grant from the National Institutes of Health Small Business Innovation Research to improve clinical outcomes, reduce health care costs, and lower out-of-pocket costs for persons living with dementia who receive care through home care agencies. Objective: This study aims to evaluate information elicited from a series of stakeholder focus groups to understand existing processes, needs, barriers, and goals for the use of the Generation Connect platform by home care agencies and formal and informal caregivers. Methods: A series of focus groups were conducted with home care agency corporate leadership, home care agency franchise owners, home care agency FCGs, and informal caregivers of persons living with dementia. The qualitative approach allowed for unrestricted idea generation that best informed the platform development to enable home care providers to differentiate their dementia care services, involve informal caregivers, improve FCG well-being, and extend the ability of persons living with dementia to age in place. Using the Technology-Enabled Caregiving in the Home framework, an inductive and iterative content analysis was conducted to identify thematic categories from the transcripts. Results: Overall, 39 participants participated across the 6 stakeholder focus groups. The following five overarching themes were identified: technology related; care services; data, documentation, and outcomes; cost, finance, and resources; and resources for caregivers. Within each theme, the most frequent subthemes were identified. Exemplar stakeholder group statements provided support for each of the identified themes. Conclusions: The focus group results will inform the further development of the Generation Connect platform to reduce the burden of caregiving for persons living with dementia, evaluate changes in cognition, preserve functional independence, and promote caregiver engagement between these individuals. The next step is to evaluate the effectiveness of the revised platform in the National Institutes of Health Small Business Innovation Research phase 2 clinical trial to assess the efficacy of its evidence-based interventions and market viability. ",
doi="10.2196/32516",
url="https://aging.jmir.org/2022/1/e32516",
url="http://www.ncbi.nlm.nih.gov/pubmed/35234657"
}


@Article{info:doi/10.2196/29224,
author="Koh, Qi Wei
and Whelan, Sally
and Heins, Pascale
and Casey, Dympna
and Toomey, Elaine
and Dr{\"o}es, Rose-Marie",
title="The Usability and Impact of a Low-Cost Pet Robot for Older Adults and People With Dementia: Qualitative Content Analysis of User Experiences and Perceptions on Consumer Websites",
journal="JMIR Aging",
year="2022",
month="Feb",
day="22",
volume="5",
number="1",
pages="e29224",
keywords="social robot",
keywords="pet robots",
keywords="low-cost robot",
keywords="dementia",
keywords="older adults",
keywords="qualitative research",
keywords="qualitative content analysis",
abstract="Background: Worldwide, populations are aging exponentially. Older adults and people with dementia are especially at risk of social isolation and loneliness. Social robots, including robotic pets, have had positive impacts on older adults and people with dementia by providing companionship, improving mood, reducing agitation, and facilitating social interaction. Nevertheless, the issue of affordability can hinder technology access. The Joy for All (JfA) robotic pets have showed promise as examples of low-cost alternatives. However, there has been no research that investigated the usability and impact of such low-cost robotic pets based on perceptions and experiences of its use with older adults and people with dementia. Objective: The aim of our study was to explore the usability and impact of the JfA robotic cat, as an example of a low-cost robot, based on perceptions and experiences of using the JfA cat for older adults and people with dementia. Methods: We used a novel methodology of analyzing a large volume of information that was uploaded by reviewers of the JfA cat onto online consumer review sites. Data were collected from 15 consumer websites. This provided a total of 2445 reviews. Next, all reviews were screened. A total of 1327 reviews that contained information about use of the JfA cat for older adults or people with dementia were included for analysis. These were reviews that contained terms relating to ``older adults,'' ``dementia,'' and ``institutional care'' and were published in the English language. Descriptive statistics was used to characterize available demographic information, and textual data were qualitatively analyzed using inductive content analysis. Results: Most reviews were derived from consumer sites in the United States, and most reviewers were family members of users (ie, older adults and people with dementia). Based on the qualitative content analysis, 5 key themes were generated: prior expectations, perceptions, meaningful activities, impacts, and practicalities. Reviewers had prior expectations of the JfA cat, which included circumstantial reasons that prompted them to purchase this technology. Their perceptions evolved after using the technology, where most reported positive perceptions about their appearance and interactivity. The use of the robot provided opportunities for users to care for it and incorporate it into their routine. Finally, reviewers also shared information about the impacts of device and practicalities related to its use. Conclusions: This study provides useful knowledge about the usability and impact of a low-cost pet robot, based on experiences and perceptions of its use. These findings can help researchers, robot developers, and clinicians understand the viability of using low-cost robotic pets to benefit older adults and people with dementia. Future research should consider evaluating design preferences for robotic pets, and compare the effects of low-cost robotic pets with other more technologically advanced robotic pets. ",
doi="10.2196/29224",
url="https://aging.jmir.org/2022/1/e29224",
url="http://www.ncbi.nlm.nih.gov/pubmed/35191844"
}


@Article{info:doi/10.2196/19967,
author="Xiong, Chen
and D'Souza, Andrea
and El-Khechen-Richandi, Graziella
and Mihailidis, Alex
and Cameron, I. Jill
and Astell, Arlene
and Nalder, Emily
and Colantonio, Angela",
title="Perceptions of Digital Technology Experiences and Development Among Family Caregivers and Technology Researchers: Qualitative Study",
journal="JMIR Form Res",
year="2022",
month="Jan",
day="28",
volume="6",
number="1",
pages="e19967",
keywords="caregiving",
keywords="digital technologies",
keywords="sex",
keywords="gender",
keywords="diversity",
abstract="Background: Caregiving is highly stressful and is associated with poor mental and physical health. Various technologies, including mobile and eHealth apps, have been developed to address caregiver needs. However, there is still a paucity of research examining the technology perceptions of informal caregivers, especially from the perspectives of sex, gender, and diversity. Objective: To address the research gap and inform the development of future caregiving technologies, this study aims to examine how family caregivers perceive using technology to assist with their caregiving routines; identify the sex, gender, and diversity factors that shape these perceptions; and understand how these perceptions and needs are reflected within the current technology development process. Methods: Semistructured interviews were conducted with 16 informal caregivers of individuals with a range of chronic medical conditions and 8 technology researchers involved in caregiving technology projects. Results: Three main themes with subthemes were developed. The first main theme is that caregivers see a need for technology in their lives, and it comprises the following 3 subthemes: caregiving is a challenging endeavor, technology is multifaceted, and caregiver preferences facilitate technology use. The second main theme is that relationships play a vital role in mediating technology uptake, and it comprises the following 2 subthemes: the caregiver-care recipient dynamic shapes technology perceptions and caregivers rely on external sources for technology information. Finally, the third main theme is that barriers are present in the use and adoption of technology, and it comprises the following 2 subthemes: technology may not be compatible with personal values and abilities and technology that is not tailored toward caregivers lacks adoption. Conclusions: The findings highlight the multifaceted role that technology can play in aiding caregiving while drawing attention to the perceived drawbacks of these technologies among caregivers. The inclusion of technology researchers in this study provides a more holistic understanding of technologies in caregiving from their initial development to their eventual uptake by caregivers. ",
doi="10.2196/19967",
url="https://formative.jmir.org/2022/1/e19967",
url="http://www.ncbi.nlm.nih.gov/pubmed/35089150"
}


@Article{info:doi/10.2196/29219,
author="Dunn, Taylor
and Howlett, E. Susan
and Stanojevic, Sanja
and Shehzad, Aaqib
and Stanley, Justin
and Rockwood, Kenneth",
title="Patterns of Symptom Tracking by Caregivers and Patients With Dementia and Mild Cognitive Impairment: Cross-sectional Study",
journal="J Med Internet Res",
year="2022",
month="Jan",
day="27",
volume="24",
number="1",
pages="e29219",
keywords="dementia",
keywords="mild cognitive impairment",
keywords="real-world evidence",
keywords="patient-centric outcomes",
keywords="machine learning",
keywords="dementia stage",
keywords="Alzheimer disease",
keywords="symptom tracking",
abstract="Background: Individuals with dementia and mild cognitive impairment (MCI) experience a wide variety of symptoms and challenges that trouble them. To address this heterogeneity, numerous standardized tests are used for diagnosis and prognosis. myGoalNav Dementia is a web-based tool that allows individuals with impairments and their caregivers to identify and track outcomes of greatest importance to them, which may be a less arbitrary and more sensitive way of capturing meaningful change. Objective: We aim to explore the most frequent and important symptoms and challenges reported by caregivers and people with dementia and MCI and how this varies according to disease severity. Methods: This cross-sectional study involved 3909 web-based myGoalNav users (mostly caregivers of people with dementia or MCI) who completed symptom profiles between 2006 and 2019. To make a symptom profile, users selected their most personally meaningful or troublesome dementia-related symptoms to track over time. Users were also asked to rank their chosen symptoms from least to most important, which we called the symptom potency. As the stage of disease for these web-based users was unknown, we applied a supervised staging algorithm, previously trained on clinician-derived data, to classify each profile into 1 of 4 stages: MCI and mild, moderate, and severe dementia. Across these stages, we compared symptom tracking frequency, symptom potency, and the relationship between frequency and potency. Results: Applying the staging algorithm to the 3909 user profiles resulted in 917 (23.46\%) MCI, 1596 (40.83\%) mild dementia, 514 (13.15\%) moderate dementia, and 882 (22.56\%) severe dementia profiles. We found that the most frequent symptoms in MCI and mild dementia profiles were similar and comprised early hallmarks of dementia (eg, recent memory and language difficulty). As the stage increased to moderate and severe, the most frequent symptoms were characteristic of loss of independent function (eg, incontinence) and behavioral problems (eg, aggression). The most potent symptoms were similar between stages and generally reflected disruptions in everyday life (eg, problems with hobbies or games, travel, and looking after grandchildren). Symptom frequency was negatively correlated with potency at all stages, and the strength of this relationship increased with increasing disease severity. Conclusions: Our results emphasize the importance of patient-centricity in MCI and dementia studies and illustrate the valuable real-world evidence that can be collected with digital tools. Here, the most frequent symptoms across the stages reflected our understanding of the typical disease progression. However, the symptoms that were ranked as most personally important by users were generally among the least frequently selected. Through individualization, patient-centered instruments such as myGoalNav can complement standardized measures by capturing these infrequent but potent outcomes. ",
doi="10.2196/29219",
url="https://www.jmir.org/2022/1/e29219",
url="http://www.ncbi.nlm.nih.gov/pubmed/35084341"
}


@Article{info:doi/10.2196/15413,
author="Egan, J. Kieren
and Clark, Patricia
and Deen, Zahid
and Paputa Dutu, Carmen
and Wilson, Graham
and McCann, Lisa
and Lennon, Marilyn
and Maguire, Roma",
title="Understanding Current Needs and Future Expectations of Informal Caregivers for Technology to Support Health and Well-being: National Survey Study",
journal="JMIR Aging",
year="2022",
month="Jan",
day="27",
volume="5",
number="1",
pages="e15413",
keywords="caregiving",
keywords="technology",
keywords="health",
keywords="well-being",
keywords="digital health",
keywords="co-design",
keywords="mobile phone",
abstract="Background: There are approximately 6.5 million informal (unpaid) caregivers in the United Kingdom. Each caregiver plays a critical role in the society, supporting the health and well-being of those who are ill, disabled, or older and who need frequent support. Digital technologies are becoming a ubiquitous part of everyday life for many, but little is known about the real-world impact of technology for those in a caring role, including the abilities of technologies to address the mental and physical impacts of caregiving. Objective: This study aims to understand the current and future technology use of caregivers, including digital technologies used to care for themselves and the person they look after. Methods: We codeveloped a wide range of questions with caregivers and care professionals and delivered this survey both on the web and in paper format (eg, using social networks such as Twitter alongside in-person events). Questions were focused on providing care and looking after caregiver health and well-being. Analyses focused on both quantitative outcomes (frequency counts and Likert questions) and explored free text entries (thematic analysis). Results: From 356 respondents, we identified that caregivers were receptive to, and largely positive about current and future use of technology both for their own care and their caring role (eg, checking in from distance). There were notable concerns, including the risk that technology could replace human contact. We identified several key areas for future work, including communication with health and social care professionals, and the potential for technology to help caregivers with their own health. We also identified several stakeholders (eg, care workers, pharmacy staff, and general practitioners) who could act as suitable points for technology signposting and support. Conclusions: Caregivers are a transient, often difficult to reach population, and this work has collated a large body of knowledge across a diverse group of individuals. Many caregivers, like the rest of society, are realizing the benefits of using everyday technology to help deliver care. It is clear that there is already a high level of dependency on technologies, where future expectations will grow. However, many barriers to digital technology use remain, including a lack of ongoing technology support. Preventive measures linked to technology that can help look after a caregiver's own health appear acceptable, particularly for communicative tools. This collated caregiver knowledge is a call for all stakeholders---academics, policy makers, and practitioners---to take note of these specific challenges, and to ensure that caregiver voices are both heard and fully integrated within the emerging digital health agenda. ",
doi="10.2196/15413",
url="https://aging.jmir.org/2022/1/e15413",
url="http://www.ncbi.nlm.nih.gov/pubmed/35084339"
}


@Article{info:doi/10.2196/30388,
author="Hudson, Georgie
and Jansli, M. Sonja
and Erturk, Sinan
and Morris, Daniel
and Odoi, M. Clarissa
and Clayton-Turner, Angela
and Bray, Vanessa
and Yourston, Gill
and Clouden, Doreen
and Proudfoot, David
and Cornwall, Andrew
and Waldron, Claire
and Wykes, Til
and Jilka, Sagar",
title="Investigation of Carers' Perspectives of Dementia Misconceptions on Twitter: Focus Group Study",
journal="JMIR Aging",
year="2022",
month="Jan",
day="24",
volume="5",
number="1",
pages="e30388",
keywords="patient and public involvement",
keywords="dementia",
keywords="co-production",
keywords="misconceptions",
keywords="stigma",
keywords="Twitter",
keywords="social media",
keywords="Alzheimer's Disease",
abstract="Background: Dementia misconceptions on social media are common, with negative effects on people with the condition, their carers, and those who know them. This study codeveloped a thematic framework with carers to understand the forms these misconceptions take on Twitter. Objective: The aim of this study is to identify and analyze types of dementia conversations on Twitter using participatory methods. Methods: A total of 3 focus groups with dementia carers were held to develop a framework of dementia misconceptions based on their experiences. Dementia-related tweets were collected from Twitter's official application programming interface using neutral and negative search terms defined by the literature and by carers (N=48,211). A sample of these tweets was selected with equal numbers of neutral and negative words (n=1497), which was validated in individual ratings by carers. We then used the framework to analyze, in detail, a sample of carer-rated negative tweets (n=863). Results: A total of 25.94\% (12,507/48,211) of our tweet corpus contained negative search terms about dementia. The carers' framework had 3 negative and 3 neutral categories. Our thematic analysis of carer-rated negative tweets found 9 themes, including the use of weaponizing language to insult politicians (469/863, 54.3\%), using dehumanizing or outdated words or statements about members of the public (n=143, 16.6\%), unfounded claims about the cures or causes of dementia (n=11, 1.3\%), or providing armchair diagnoses of dementia (n=21, 2.4\%). Conclusions: This is the first study to use participatory methods to develop a framework that identifies dementia misconceptions on Twitter. We show that misconceptions and stigmatizing language are not rare. They manifest through minimizing and underestimating language. Web-based campaigns aiming to reduce discrimination and stigma about dementia could target those who use negative vocabulary and reduce the misconceptions that are being propagated, thus improving general awareness. ",
doi="10.2196/30388",
url="https://aging.jmir.org/2022/1/e30388",
url="http://www.ncbi.nlm.nih.gov/pubmed/35072637"
}


@Article{info:doi/10.2196/34792,
author="Shaffer, M. Kelly
and Ritterband, M. Lee
and You, Wen
and Buysse, J. Daniel
and Mattos, K. Meghan
and Camacho, Fabian
and Glazer, V. Jillian
and Klinger, Julie
and Donovan, Heidi",
title="Single-Group Trial of an Internet-Delivered Insomnia Intervention Among Higher-Intensity Family Caregivers: Rationale and Protocol for a Mixed Methods Study",
journal="JMIR Res Protoc",
year="2022",
month="Jan",
day="12",
volume="11",
number="1",
pages="e34792",
keywords="family caregiver",
keywords="cognitive behavioral therapy",
keywords="insomnia",
keywords="sleep initiation and maintenance disorders",
keywords="eHealth",
keywords="protocol",
keywords="mobile phone",
abstract="Background: Family caregivers are more likely to experience insomnia relative to noncaregivers but have significant barriers to accessing gold standard cognitive behavioral therapy for insomnia treatment. Delivering interventions to caregivers through the internet may help increase access to care, particularly among higher-intensity caregivers who provide assistance with multiple care tasks over many hours per week. Although there are existing internet interventions that have been thoroughly studied and demonstrated as effective in the general population, the extent to which these interventions may be effective for caregivers without tailoring to address this population's unique psychosocial needs has not been studied. Objective: The goal of this trial is to determine what tailoring may be necessary for which caregivers to ensure they receive optimal benefit from an existing evidence-based, internet-delivered cognitive behavioral therapy for insomnia program named Sleep Healthy Using the Internet (SHUTi). Specifically, we will test the association between caregivers' engagement with SHUTi and their caregiving context characteristics (ie, caregiving strain, self-efficacy, and guilt) and environment (ie, proximity to care recipient; functional status, cognitive status, and problem behavior of care recipient; and type of care provided). Among caregivers using the program, we will also test the associations between change in known treatment mechanisms (sleep beliefs and sleep locus of control) and caregiving context factors. Methods: A total of 100 higher-intensity caregivers with significant insomnia symptoms will be recruited from across the United States to receive access to SHUTi in an open-label trial with mixed methods preassessments and postassessments. At postassessment (9 weeks following preassessment completion), participants will be categorized according to their engagement with the program (nonusers, incomplete users, or complete users). Study analyses will address 3 specific aims: to examine the association between caregivers' engagement with SHUTi and their caregiving context (aim 1a); to describe caregivers' barriers to and motivations for SHUTi engagement from open-ended survey responses (aim 1b); and among caregivers using SHUTi, to determine whether cognitive mechanisms of change targeted by SHUTi are associated with differences in caregiving context (aim 2). Results: Institutional review board approvals have been received. Data collection is anticipated to begin in December 2021 and is expected to be completed in 2023. Conclusions: Findings will inform the next research steps for tailoring and testing SHUTi for optimal impact and reach among caregivers. Beyond implication to the SHUTi program, the findings will be translatable across intervention programs and will hold significant promise to reduce inefficiencies in developing digital health interventions for caregivers while also increasing their impact and reach for this underserved population. Trial Registration: ClinicalTrials.gov; NCT04986904; https://clinicaltrials.gov/ct2/show/NCT04986904?term=NCT04986904 International Registered Report Identifier (IRRID): PRR1-10.2196/34792 ",
doi="10.2196/34792",
url="https://www.researchprotocols.org/2022/1/e34792",
url="http://www.ncbi.nlm.nih.gov/pubmed/35019846"
}


@Article{info:doi/10.2196/29876,
author="Pham, Quynh
and El-Dassouki, Noor
and Lohani, Raima
and Jebanesan, Aravinth
and Young, Karen",
title="The Future of Virtual Care for Older Ethnic Adults Beyond the COVID-19 Pandemic",
journal="J Med Internet Res",
year="2022",
month="Jan",
day="7",
volume="24",
number="1",
pages="e29876",
keywords="virtual care",
keywords="digital health",
keywords="health equity",
keywords="cultural equity",
keywords="chronic disease",
keywords="caregivers",
keywords="ethnocultural minority",
keywords="older adults",
keywords="ethnicity",
keywords="ethnic patients",
keywords="technology-mediated care",
keywords="equity",
keywords="diversity",
keywords="family",
doi="10.2196/29876",
url="https://www.jmir.org/2022/1/e29876",
url="http://www.ncbi.nlm.nih.gov/pubmed/34994707"
}


@Article{info:doi/10.2196/32422,
author="Sutherland, Stephanie
and Jeong, Dahn
and Cheng, Michael
and St-Jean, Mireille
and Jalali, Alireza",
title="Perceptions of Educational Needs in an Era of Shifting Mental Health Care to Primary Care: Exploratory Pilot Study",
journal="JMIR Form Res",
year="2022",
month="Jan",
day="7",
volume="6",
number="1",
pages="e32422",
keywords="mental health",
keywords="Canada",
keywords="qualitative research",
keywords="caregiver",
keywords="family physician",
keywords="mentorship",
abstract="Background: There is an unmet need for mental health care in Canada. Primary care providers such as general practitioners and family physicians are the essential part of mental health care services; however, mental health is often underestimated and underprioritized by family physicians. It is currently not known what is required to increase care providers' willingness, comfort, and skills to adequately provide care to patients who present with mental health issues. Objective: The aim of this study was to understand the need of caregivers (family members overseeing care of an individual with a mental health diagnosis) and family physicians regarding the care and medical management of individuals with mental health conditions. Methods: A needs assessment was designed to understand the educational needs of caregivers and family physicians regarding the provision of mental health care, specifically to seek advice on the format and delivery mode for an educational curriculum to be accessed by both stakeholder groups. Exploratory qualitative interviews were conducted, and data were collected and analyzed iteratively until thematic saturation was achieved. Results: Caregivers of individuals with mental health conditions (n=24) and family physicians (n=10) were interviewed. Both the caregivers and the family physicians expressed dissatisfaction with the status quo regarding the provision of mental health care at the family physician's office. They stated that there was a need for more educational materials as well as additional support. The caregivers expressed a general lack of confidence in family physicians to manage their son's or daughter's mental health condition, while family physicians sought more networking opportunities to improve and facilitate the provision of mental health care. Conclusions: Robust qualitative studies are necessary to identify the educational and medical management needs of caregivers and family physicians. Understanding each other's perspectives is an essential first step to collaboratively designing, implementing, and subsequently evaluating community-based mental health care. Fortunately, there are initiatives underway to address these need areas (eg, websites such as the eMentalHealth, as well as the mentorship and collaborative care network), and information from this study can help inform the gaps in those existing initiatives. ",
doi="10.2196/32422",
url="https://formative.jmir.org/2022/1/e32422",
url="http://www.ncbi.nlm.nih.gov/pubmed/34994704"
}


@Article{info:doi/10.2196/28895,
author="Tennant, Ryan
and Allana, Sana
and Mercer, Kate
and Burns, M. Catherine",
title="Exploring the Experiences of Family Caregivers of Children With Special Health Care Needs to Inform the Design of Digital Health Systems: Formative Qualitative Study",
journal="JMIR Form Res",
year="2022",
month="Jan",
day="5",
volume="6",
number="1",
pages="e28895",
keywords="children",
keywords="caregiver",
keywords="digital health",
keywords="home care",
keywords="qualitative research",
keywords="technology",
abstract="Background: Family caregivers of children with special health care needs (CSHCN) are responsible for managing and communicating information regarding their child's health in their homes. Although family caregivers currently capture information through nondigital methods, digital health care applications are a promising solution for supporting the standardization of information management in complex home care across their child's health care team. However, family caregivers continue to use paper-based methods where the adoption of digital health care tools is low. With the rise in home care for children with complex health care needs, it is important to understand the caregiving work domain to inform the design of technologies that support child safety in the home. Objective: The aim of this study is to explore how family caregivers navigate information management and communication in complex home care for CSHCN. Methods: This research is part of a broader study to explore caregivers' perspectives on integrating and designing digital health care tools for complex home care. The broader study included interviews and surveys about designing a voice user interface to support home care. This formative study explored semistructured interview data with family caregivers of CSHCN about their home care situations. Inductive thematic analysis was used to analyze the information management and communication processes. Results: We collected data from 7 family caregivers in North America and identified 5 themes. First, family caregivers were continuously learning to provide care. They were also updating the caregiver team on their child's status and teaching caregivers about their care situation. As caregiving teams grew, they found themselves working on communicating with their children's educators. Beyond the scope of managing their child's health information, family caregivers also navigated bureaucratic processes for their child's home care. Conclusions: Family caregivers' experiences of caring for CSHCN differ contextually and evolve as their child's condition changes and they grow toward adulthood. Family caregivers recorded information using paper-based tools, which did not sufficiently support information management. They also experienced significant pressure in summarizing information and coordinating 2-way communication about the details of their child's health with caregivers. The design of digital health care systems and tools for complex home care may improve care coordination if they provide an intuitive method for information interaction and significant utility by delivering situation-specific insights and adapting to unique and dynamic home care environments. Although these findings provide a foundational understanding, there is an opportunity for further research to generalize the findings. ",
doi="10.2196/28895",
url="https://formative.jmir.org/2022/1/e28895",
url="http://www.ncbi.nlm.nih.gov/pubmed/34989692"
}


@Article{info:doi/10.2196/30975,
author="Bouldin, D. Erin
and Delgado, Roxana
and Peacock, Kimberly
and Hale, Willie
and Roghani, Ali
and Trevino, Y. Amira
and Viny, Mikayla
and Wetter, W. David
and Pugh, Jo Mary",
title="Military Injuries---Understanding Posttraumatic Epilepsy, Health, and Quality-of-Life Effects of Caregiving: Protocol for a Longitudinal Mixed Methods Observational Study",
journal="JMIR Res Protoc",
year="2022",
month="Jan",
day="5",
volume="11",
number="1",
pages="e30975",
keywords="epilepsy",
keywords="military personnel",
keywords="veterans",
keywords="caregiver",
keywords="traumatic brain injury",
keywords="quality of life",
keywords="health status",
keywords="longitudinal studies",
keywords="ecologic momentary assessment",
keywords="qualitative research",
abstract="Background: Veterans with posttraumatic epilepsy (PTE), particularly those with comorbidities associated with epilepsy or traumatic brain injury (TBI), have poorer health status and higher symptom burden than their peers without PTE. One area that has been particularly poorly studied is that of the role of caregivers in the health of veterans with PTE and the impact caring for someone with PTE has on the caregivers themselves. Objective: In this study, we aim to address the following: describe and compare the health and quality of life of veterans and caregivers of veterans with and without PTE; evaluate the change in available supports and unmet needs for services among caregivers of post-9/11 veterans with PTE over a 2-year period and to compare support and unmet needs with those without PTE; and identify veteran and caregiver characteristics associated with the 2-year health trajectories of caregivers and veterans with PTE compared with veterans without PTE. Methods: We conducted a prospective cohort study of the health and quality of life among 4 groups of veterans and their caregivers: veterans with PTE, nontraumatic epilepsy, TBI only, and neither epilepsy nor TBI. We will recruit participants from previous related studies and collect information about both the veterans and their primary informal caregivers on health, quality of life, unmet needs for care, PTE and TBI symptoms and treatment, relationship, and caregiver experience. Data sources will include existing data supplemented with primary data, such as survey data collected at baseline, intermittent brief reporting using ecological momentary assessment, and qualitative interviews. We will make both cross-sectional and longitudinal comparisons, using veteran-caregiver dyads, along with qualitative findings to better understand risk and promotive factors for quality of life and health among veterans and caregivers, as well as the bidirectional impact of caregivers and care recipients on one another. Results: This study was approved by the institutional review boards of the University of Utah and Salt Lake City Veterans Affairs and is under review by the Human Research Protection Office of the United States Army Medical Research and Development Command. The Service Member, Veteran, and Caregiver Community Stakeholders Group has been formed and the study questionnaire will be finalized once the panel reviews it. We anticipate the start of recruitment and primary data collection by January 2022. Conclusions: New national initiatives aim to incorporate the caregiver into the veteran's treatment plan; however, we know little about the impact of caregiving---both positive and negative---on the caregivers themselves and on the veterans for whom they provide care. We will identify specific needs in this understudied population, which will inform clinicians, patients, families, and policy makers about the specific impact and needs to equip caregivers in caring for veterans at home. International Registered Report Identifier (IRRID): PRR1-10.2196/30975 ",
doi="10.2196/30975",
url="https://www.researchprotocols.org/2022/1/e30975",
url="http://www.ncbi.nlm.nih.gov/pubmed/34989689"
}


@Article{info:doi/10.2196/32842,
author="Carlozzi, E. Noelle
and Choi, Won Sung
and Wu, Zhenke
and Miner, A. Jennifer
and Lyden, K. Angela
and Graves, Christopher
and Wang, Jitao
and Sen, Srijan",
title="An App-Based Just-in-Time Adaptive Self-management Intervention for Care Partners (CareQOL): Protocol for a Pilot Trial",
journal="JMIR Res Protoc",
year="2021",
month="Dec",
day="9",
volume="10",
number="12",
pages="e32842",
keywords="caregivers",
keywords="quality of life",
keywords="spinal cord injuries",
keywords="Huntington disease",
keywords="hematopoietic stem cell transplantation",
keywords="feasibility studies",
keywords="self-management",
keywords="mobile apps",
keywords="outcome assessment",
keywords="mobile phone",
abstract="Background: Care partners (ie, informal family caregivers) of individuals with health problems face considerable physical and emotional stress, often with a substantial negative impact on the health-related quality of life (HRQOL) of both care partners and care recipients. Given that these individuals are often overwhelmed by their caregiving responsibilities, low-burden self-management interventions are needed to support care partners to ensure better patient outcomes. Objective: The primary objective of this study is to describe an intensive data collection protocol that involves the delivery of a personalized just-in-time adaptive intervention that incorporates passive mobile sensor data feedback (sleep and activity data from a Fitbit [Fitbit LLC]) and real time self-reporting of HRQOL via a study-specific app called CareQOL (University of Michigan) to provide personalized feedback via app alerts. Methods: Participants from 3 diverse care partner groups will be enrolled (care partners of persons with spinal cord injury, care partners of persons with Huntington disease, and care partners of persons with hematopoietic cell transplantation). Participants will be randomized to either a control group, where they will wear the Fitbit and provide daily reports of HRQOL over a 3-month (ie, 90 days) period (without personalized feedback), or the just-in-time adaptive intervention group, where they will wear the Fitbit, provide daily reports of HRQOL, and receive personalized push notifications for 3 months. At the end of the study, participants will complete a feasibility and acceptability questionnaire, and metrics regarding adherence and attrition will be calculated. Results: This trial opened for recruitment in November 2020. Data collection was completed in June 2021, and the primary results are expected to be published in 2022. Conclusions: This trial will determine the feasibility and acceptability of an intensive app-based intervention in 3 distinct care partner groups: care partners for persons with a chronic condition that was caused by a traumatic event (ie, spinal cord injury); care partners for persons with a progressive, fatal neurodegenerative disease (ie, Huntington disease); and care partners for persons with episodic cancer conditions that require intense, prolonged inpatient and outpatient treatment (persons with hematopoietic cell transplantation). Trial Registration: ClinicalTrials.gov NCT04556591; https://clinicaltrials.gov/ct2/show/NCT04556591  International Registered Report Identifier (IRRID): DERR1-10.2196/32842 ",
doi="10.2196/32842",
url="https://www.researchprotocols.org/2021/12/e32842",
url="http://www.ncbi.nlm.nih.gov/pubmed/34889775"
}


@Article{info:doi/10.2196/30353,
author="Anderson, Smith Martha
and Bankole, Azziza
and Homdee, Nutta
and Mitchell, A. Brook
and Byfield, E. Grace
and Lach, John",
title="Dementia Caregiver Experiences and Recommendations for Using the Behavioral and Environmental Sensing and Intervention System at Home: Usability and Acceptability Study",
journal="JMIR Aging",
year="2021",
month="Dec",
day="6",
volume="4",
number="4",
pages="e30353",
keywords="dementia",
keywords="agitation",
keywords="sensors",
keywords="smart health",
keywords="wearable technology",
keywords="just-in-time notifications",
keywords="caregiver",
keywords="dyad",
keywords="home-based",
keywords="qualitative",
abstract="Background: Caregiver burden associated with dementia-related agitation is one of the most common reasons for a community-dwelling person living with dementia to transition to a care facility. The Behavioral and Environmental Sensing and Intervention (BESI) for the Dementia Caregiver Empowerment system uses sensing technology, smartwatches, tablets, and data analytics to detect and predict agitation in persons living with dementia and to provide just-in-time notifications and dyad-specific intervention recommendations to caregivers. The BESI system has shown that there is a valid relationship between dementia-related agitation and environmental factors and that caregivers prefer a home-based monitoring system. Objective: The aim of this study is to obtain input from caregivers of persons living with dementia on the value, usability, and acceptability of the BESI system in the home setting and obtain their insights and recommendations for the next stage of system development. Methods: A descriptive qualitative design with thematic analysis was used to analyze 10 semistructured interviews with caregivers. The interviews comprised 16 questions, with an 80\% (128/160) response rate. Results: Postdeployment caregiver feedback about the BESI system and the overall experience were generally positive. Caregivers acknowledged the acceptability of the system by noting the ease of use and saw the system as a fit for them. Functionality issues such as timeliness in agitation notification and simplicity in the selection of agitation descriptors on the tablet interface were identified, and caregivers indicated a desire for more word options to describe agitation behaviors. Agitation intervention suggestions were well received by the caregivers, and the resulting decrease in the number and severity of agitation events helped confirm that the BESI system has good value and acceptability. Thematic analysis suggested several subjective experiences and yielded the themes of usefulness and helpfulness. Conclusions: This study determined preferences for assessing caregiver strain and burden, explored caregiver acceptance of the technology system (in-home sensors, actigraph or smart watch technology, and tablet devices), discerned caregiver insights on the burden and stress of caring for persons living with dementia experiencing agitation in dementia, and solicited caregiver input and recommendations for system changes. The themes of usefulness and helpfulness support the use of caregiver knowledge and experience to inform further development of the technology. ",
doi="10.2196/30353",
url="https://aging.jmir.org/2021/4/e30353",
url="http://www.ncbi.nlm.nih.gov/pubmed/34874886"
}


@Article{info:doi/10.2196/28652,
author="Goodridge, Donna
and Reis, Nathan
and Neiser, Jenna
and Haubrich, Tim
and Westberg, Bev
and Erickson-Lumb, Laura
and Storozinski, Jo
and Gonzales, Cesar
and Michael, Joanne
and Cammer, Allison
and Osgood, Nathaniel",
title="An App-Based Mindfulness-Based Self-compassion Program to Support Caregivers of People With Dementia: Participatory Feasibility Study",
journal="JMIR Aging",
year="2021",
month="Nov",
day="26",
volume="4",
number="4",
pages="e28652",
keywords="virtual support programs",
keywords="caregivers",
keywords="dementia",
keywords="mindfulness",
keywords="self-compassion",
keywords="mobile health",
keywords="mobile applications",
keywords="elderly",
keywords="older adults",
keywords="usability",
keywords="feasibility",
keywords="smartphone app",
keywords="mobile phone",
abstract="Background: The number of persons with dementia is steadily growing, as is the number of individuals supporting persons with dementia. Primary caregivers of persons with dementia are most often family members or spouses of the persons with dementia, and they are more likely to experience increased stress and other negative effects than individuals who are not primary caregivers. Although in-person support groups have been shown to help buffer the negative impacts of caregiving, some caregivers live in isolated or rural communities and are unable to make the burdensome commitment of traveling to cities. Using an interdisciplinary approach, we developed a mobile smartphone support app designed for primary caregivers of persons with dementia, with the goal of reducing caregiver burden and easing stress. The app features a 12-week intervention, largely rooted in mindfulness-based self-compassion (MBSC), because MBSC has been linked to minimizing stress, depression, and anxiety. Objective: The primary objectives of our program are twofold: to explore the feasibility of a 12-week mobile support program and to conduct an initial efficacy evaluation of changes in perceived caregiver burden, coping styles, and emotional well-being of caregivers before and after the program. Methods: Our feasibility study used a 2-phase participatory pretest and posttest design, focusing on acceptability, demand, practicality, implementation, and efficacy. At phase I, we recruited 57 primary caregivers of persons with dementia (mean age 76.3, SD 12.9 years), comprising spouses (21/57, 37\%), children (21/57, 37\%), and friends or relatives (15/57, 26\%) of persons with dementia, of whom 29 (51\%) completed all measures at both pre- and postprogram. The content of the program featured a series of MBSC podcasts. Our primary outcome measure was caregiver burden, with secondary outcome measures including coping styles and emotional well-being. Daily ecological momentary assessments enabled us to ask participants, ``How are you feeling today?'' Phase II of our study involved semistructured follow-up interviews with most participants (n=21) who completed phase I. Results: Our findings suggest that our app or program meets the feasibility criteria examined. Notably, participants generally accepted the program and believed it could be a useful resource. Emotional well-being increased significantly (P=.04), and emotion-based coping significantly decreased (P=.01). Participants generally considered the app or program to be a helpful resource. Conclusions: Although there were no significant changes in caregiver burden, we were encouraged by the increased emotional well-being of our participants following the completion of our program. We also conclude that our app or program demonstrated feasibility (ie, acceptability, practicality, implementation, and efficacy) and can provide a much-needed resource for primary caregivers of persons with dementia. In the subsequent version of the program, we will respond to participant feedback by incorporating web-based weekly sessions and incorporating an outcome measure of self-compassion. ",
doi="10.2196/28652",
url="https://aging.jmir.org/2021/4/e28652",
url="http://www.ncbi.nlm.nih.gov/pubmed/34842530"
}


@Article{info:doi/10.2196/16824,
author="Lasrado, Reena
and Bielsten, Therese
and Hann, Mark
and Schumm, James
and Reilly, Theresa Siobhan
and Davies, Linda
and Swarbrick, Caroline
and Dowlen, Robyn
and Keady, John
and Hellstr{\"o}m, Ingrid",
title="Developing a Management Guide (the DemPower App) for Couples Where One Partner Has Dementia: Nonrandomized Feasibility Study",
journal="JMIR Aging",
year="2021",
month="Nov",
day="16",
volume="4",
number="4",
pages="e16824",
keywords="dementia guide",
keywords="self-management for couples with dementia",
keywords="dementia self-help",
keywords="dementia app",
keywords="dementia resource",
keywords="feasibility study",
keywords="nonrandomized study",
keywords="dementia intervention",
abstract="Background: Promoting the health and well-being of couples where one partner has dementia is an overlooked area of care practice. Most postdiagnostic services currently lack a couple-centered approach and have a limited focus on the couple relationship. To help address this situation, we developed a tablet-based self-management guide (DemPower) focused on helping couples enhance their well-being and relationship quality. Objective: The aim of this study is to investigate the feasibility and acceptability of the DemPower app. Methods: A nonrandomized feasibility design was used to evaluate the DemPower intervention over 3 months among couples where a partner had a diagnosis of dementia. The study recruited 25 couples in the United Kingdom and 19 couples in Sweden. Outcome measures were obtained at baseline and postintervention. The study process and interventions were evaluated at various stages. Results: The study was completed by 48\% (21/44) of couples where one partner had dementia, of whom 86\% (18/21) of couples accessed all parts of the DemPower app. Each couple spent an average of 8 hours (SD 3.35 hours) using the app during the study period. In total, 90\% (19/21) of couples reported that all sections of DemPower were useful in addressing various aspects of daily life and helped to focus on how they interacted in their relationship. Of the 4 core subjects on which the DemPower app was structured, home and neighborhood received the highest number of visits. Couples used activity sections more often than the core subject pages. The perception of DemPower's utility varied with each couple's lived experience of dementia, geographic location, relationship dynamics, and opportunities for social interaction. A 5.2-point increase in the dementia quality of life score for people with dementia and a marginal increase in the Mutuality scale (+1.23 points) for caregiver spouses were found. Design and navigational challenges were reported in the DemPower app. Conclusions: The findings suggest that the DemPower app is a useful resource for couples where one partner has dementia and that the implementation of the app requires the support of memory clinics to reach couples at early diagnosis. Trial Registration: ISRCTN Registry ISRCTN10122979; http://www.isrctn.com/ISRCTN10122979 ",
doi="10.2196/16824",
url="https://aging.jmir.org/2021/4/e16824",
url="http://www.ncbi.nlm.nih.gov/pubmed/34783666"
}


@Article{info:doi/10.2196/33572,
author="Nguyen, Anh Tuan
and Tran, Kham
and Esterman, Adrian
and Brijnath, Bianca
and Xiao, Dongxia Lily
and Schofield, Penelope
and Bhar, Sunil
and Wickramasinghe, Nilmini
and Sinclair, Ronald
and Dang, Ha Thu
and Cullum, Sarah
and Turana, Yuda
and Hinton, Ladson
and Seeher, Katrin
and Andrade, Q. Andre
and Crotty, Maria
and Kurrle, Susan
and Freel, Stefanie
and Pham, Thang
and Nguyen, Binh Thanh
and Brodaty, Henry",
title="Empowering Dementia Carers With an iSupport Virtual Assistant (e-DiVA) in Asia-Pacific Regional Countries: Protocol for a Pilot Multisite Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2021",
month="Nov",
day="16",
volume="10",
number="11",
pages="e33572",
keywords="Dementia",
keywords="informal carer",
keywords="iSupport",
keywords="virtual assistant",
keywords="digital health",
abstract="Background: Dementia is a global public health priority with an estimated prevalence of 150 million by 2050, nearly two-thirds of whom will live in the Asia-Pacific region. Dementia creates significant care needs for people with the disease, their families, and carers. iSupport is a self-help platform developed by the World Health Organization (WHO) to provide education, skills training, and support to dementia carers. It has been adapted in some contexts (Australia, India, the Netherlands, and Portugal). Carers using the existing adapted versions have identified the need to have a more user-friendly version that enables them to identify solutions for immediate problems quickly in real time. The iSupport virtual assistant (iSupport VA) is being developed to address this gap and will be evaluated in a randomized controlled trial (RCT). Objective: This paper reports the protocol of a pilot RCT evaluating the iSupport VA. Methods: Seven versions of iSupport VA will be evaluated in Australia, Indonesia, New Zealand, and Vietnam in a pilot RCT. Feasibility, acceptability, intention to use, and preliminary impact on carer-perceived stress of the iSupport VA intervention will be assessed. Results: This study was funded by the e-ASIA Joint Research Program in November 2020. From January to July 2023, we will enroll 140 dementia carers (20 carers per iSupport VA version) for the pilot RCT. The study has been approved by the Human Research Committee, University of South Australia, Australia (203455). Conclusions: This protocol outlines how a technologically enhanced version of the WHO iSupport program---the iSupport VA---will be evaluated. The findings from this intervention study will provide evidence on the feasibility and acceptability of the iSupport VA intervention, which will be the basis for conducting a full RCT to assess the effectiveness of the iSupport VA. The study will be an important reference for countries planning to adapt and enhance the WHO iSupport program using digital health solutions. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12621001452886; https://tinyurl.com/afum5tjz International Registered Report Identifier (IRRID): PRR1-10.2196/33572 ",
doi="10.2196/33572",
url="https://www.researchprotocols.org/2021/11/e33572",
url="http://www.ncbi.nlm.nih.gov/pubmed/34783660"
}


@Article{info:doi/10.2196/30841,
author="Bastoni, Sofia
and Wrede, Christian
and da Silva, Cristina Marcia
and Sanderman, Robbert
and Gaggioli, Andrea
and Braakman-Jansen, Annemarie
and van Gemert-Pijnen, Lisette",
title="Factors Influencing Implementation of eHealth Technologies to Support Informal Dementia Care: Umbrella Review",
journal="JMIR Aging",
year="2021",
month="Oct",
day="8",
volume="4",
number="4",
pages="e30841",
keywords="eHealth",
keywords="assistive technologies",
keywords="dementia",
keywords="informal care",
keywords="home care",
keywords="implementation",
abstract="Background: The worldwide increase in community-dwelling people with dementia underscores the need for innovative eHealth technologies that aim to provide support to both patients and their informal caregivers in the home setting. However, sustainable implementation of eHealth technologies within this target group can be difficult. Objective: The goal of this study was to gain a thorough understanding of why it is often difficult to implement eHealth technologies in practice, even though numerous technologies are designed to support people with dementia and their informal caregivers at home. In particular, our study aimed to (1) provide an overview of technologies that have been used and studied in the context of informal dementia care and (2) explore factors influencing the implementation of these technologies. Methods: Following an umbrella review design, five different databases were searched (PubMed, PsycINFO, Medline, Scopus, and Cochrane) for (systematic) reviews. Among 2205 reviews retrieved, 21 were included in our analysis based on our screening and selection procedure. A combination of deductive and inductive thematic analyses was performed, using the Nonadoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) framework for organizing the findings. Results: We identified technologies designed to be used ``by informal caregivers,'' ``by people with dementia,'' and ``with people with dementia.'' Within those groups, most of the represented technologies included, respectively: (i) devices for in-home monitoring of lifestyle, health, and safety; (ii) technologies for supporting memory, orientation, and day structure; and (iii) technologies to facilitate communication between the informal caregiver and person with dementia. Most of the identified factors influencing implementation related to the condition of dementia, characteristics of the technology, expected/perceived value of users, and characteristics of the informal caregiver. Considerably less information has been reported on factors related to the implementing organization and technology supplier, wider institutional and sociocultural context of policy and regulations, and continued adaptation of technology over time. Conclusions: Our study offers a comprehensive overview of eHealth technologies in the context of informal dementia care and contributes to gaining a better understanding of a broad range of factors influencing their implementation. Our results uncovered a knowledge gap regarding success factors for implementation related to the organizational and broader context and continuous adaptation over the long term. Although future research is needed, the current findings can help researchers and stakeholders in improving the development and implementation of eHealth technologies to support informal dementia care. ",
doi="10.2196/30841",
url="https://aging.jmir.org/2021/4/e30841",
url="http://www.ncbi.nlm.nih.gov/pubmed/34623314"
}


@Article{info:doi/10.2196/27862,
author="Sharma, Nikita
and Brinke, Klein Jeroen
and Gemert-Pijnen, Van J. E. W. C.
and Braakman-Jansen, A. L. M.",
title="Implementation of Unobtrusive Sensing Systems for Older Adult Care: Scoping Review",
journal="JMIR Aging",
year="2021",
month="Oct",
day="6",
volume="4",
number="4",
pages="e27862",
keywords="elderly care",
keywords="unobtrusive",
keywords="sensing system",
keywords="caregiving",
keywords="implementation",
keywords="mobile phone",
keywords="older adults",
abstract="Background: The continuous growth of the older adult population will have implications for the organization of health and social care. Potentially, in-home monitoring unobtrusive sensing systems (USSs) can be used to support formal or informal caregivers of older adults, as they can monitor deviant physical and physiological behavior changes. Most existing USSs are not specific to older adult care. Hence, to facilitate the implementation of existing USSs in older adult care, it is important to know which USSs would be more suitable for older adults. Objective: This scoping review aims to examine the literature to identify current USSs for monitoring human activities and behaviors and assess their implementation readiness for older adult care. Methods: We conducted a structured search in the Scopus, Web of Science, and ACM Digital Library databases. Predefined inclusion criteria included studies on unobtrusive sensor-based technology; experimental in nature; aimed at monitoring human social, emotional, physical, and physiological behavior; having the potential to be scalable in in-home care; and having at least 5 adults as participants. Using these criteria, we screened studies by title, abstract, and full text. A deductive thematic analysis based on the Proctor implementation framework along with an additional outcome of external validity was applied to the included studies to identify the factors contributing to successful implementation. Finally, the identified factors were used to report the implementation readiness of the included studies for older adult care. Results: In this review, 52 studies were included. Deductive analysis using the implementation framework by Proctor resulted in six factors that can contribute to the successful implementation of USSs in older adult care: study settings, age of participants, activities monitored, sensor setup, sensing technology used, and usefulness of USSs. These factors were associated with the implementation outcomes as follows: study settings and age of participants contributed to external validity, sensor setup contributed to acceptability, usefulness of USSs contributed to adoption, activities monitored contributed to appropriateness, and sensing technology used contributed to implementation cost. Furthermore, the implementation assessment of the included 52 studies showed that none of the studies addressed all the identified factors. This assessment was useful in highlighting studies that have addressed multiple factors; thus, these studies represent a step ahead in the implementation process. Conclusions: This review is the first to scope state-of-the-art USSs suitable for older adult care. Although the included 52 USS studies fulfilled the basic criteria to be suitable for older adult care, systems leveraging radio frequency technology in a no-contact sensor setup for monitoring life risk or health wellness activities are more suitable for older adult care. Finally, this review has extended the discussion about unobtrusiveness as a property of systems that cannot be measured in binary because it varies greatly with user perception and context. ",
doi="10.2196/27862",
url="https://aging.jmir.org/2021/4/e27862",
url="http://www.ncbi.nlm.nih.gov/pubmed/34612822"
}


@Article{info:doi/10.2196/29074,
author="Raj, Minakshi
and Iott, Bradley",
title="Evaluation of Family Caregivers' Use of Their Adult Care Recipient's Patient Portal From the 2019 Health Information National Trends Survey: Secondary Analysis",
journal="JMIR Aging",
year="2021",
month="Oct",
day="4",
volume="4",
number="4",
pages="e29074",
keywords="informal caregivers",
keywords="family caregivers",
keywords="patient portal",
keywords="electronic health record",
keywords="telehealth",
keywords="aging in place",
keywords="web-based medical record",
abstract="Background: Patient engagement is critical for realizing the value of telehealth modalities such as the patient portal. Family caregiver engagement may also be critical for facilitating the use of the patient portal among adult patients, including older adults. Objective: This study aims to analyze the 2019 Health Information National Trends Survey to characterize family caregivers' use of their care recipient's patient portal in terms of sociodemographic, health, and caregiving characteristics and caregivers' use of their own portal. Methods: We conducted a secondary analysis of cross-sectional data from the National Cancer Institute's Health Information National Trends Survey 5 Cycle 3. This survey was administered to 5438 US adults between January and May 2019. We analyzed data from 320 respondents who were identified as family caregivers. We created measures to reflect family caregivers' use of their care recipient's and their own portal, caregiver demographic and caregiving characteristics, and care recipient health characteristics. Results: Over half of the caregivers (179/320, 55.9\%) reported using their own portal at least once, whereas only one-third (105/320, 32.8\%) reported using their care recipient's record in the previous 12 months. Caregivers using their own portal were significantly more likely to use their care recipient's portal (odds ratio 11.18; P<.001). Conclusions: Policies should enable patients to designate family caregivers who can access their patient portal. Providers could screen caregivers for challenges in their caregiving responsibilities that may be addressed through the portal so they can better support their adult relatives. Interventions to support family caregivers, especially older caregivers, in using their own portal may facilitate their use of their care recipient's portal. ",
doi="10.2196/29074",
url="https://aging.jmir.org/2021/4/e29074",
url="http://www.ncbi.nlm.nih.gov/pubmed/34605766"
}


@Article{info:doi/10.2196/27358,
author="Egan, J. Kieren
and Hodgson, William
and Dunlop, D. Mark
and Imperatore, Gennaro
and Kirk, Alison
and Maguire, Roma",
title="A Novel Mobile App (``CareFit'') to Support Informal Caregivers to Undertake Regular Physical Activity From Home During and Beyond COVID-19 Restrictions: Co-design and Prototype Development Study",
journal="JMIR Form Res",
year="2021",
month="Oct",
day="1",
volume="5",
number="10",
pages="e27358",
keywords="physical activity",
keywords="Android",
keywords="COVID-19",
keywords="intervention",
keywords="co-design",
keywords="exercise",
keywords="app",
keywords="development",
keywords="support",
keywords="caregiver",
abstract="Background: Informal caregivers, or carers (unpaid family members and friends), are instrumental to millions worldwide for the ongoing delivery of health and well-being needs. The risk of crisis points (eg, hospitalizations) for caregivers increases with the absence of physical activity. The COVID-19 pandemic is highly likely to have increased the risk of crisis points for caregivers by increasing the amount of time spent indoors due to shielding and lockdown restrictions. Thus, accessible evidence-based tools to facilitate physical activity for caregivers indoors are urgently needed. Objective: The aim of this study was to co-design and develop a novel mobile app to educate and support carers in the undertaking of regular physical activity at home during and beyond COVID-19 restrictions via integration of the transtheoretical model of behavior change and UK physical activity guidelines. Methods: We co-designed a mobile app, ``CareFit,'' by directly involving caregivers, health care professionals, and social care professionals in the requirements, capturing, and evaluation phases of three Agile Scrum design and development sprints. Seven participants representing multistakeholder views took part in three co-design sessions, each of which was followed by a development sprint. Requirements for CareFit were grounded in a combination of behavioral change science and UK government guidelines for physical activity. Results: Participants identified different barriers and enablers to physical activity, such as a lack of time, recognition of existing activities, and concerns regarding safely undertaking physical activity. Requirements analysis highlighted the importance of simplicity in design and a need to anchor development around the everyday needs of caregivers (eg, easy-to-use video instructions). Our final prototype app integrated guidance for undertaking physical activity at home through educational, physical activity, and communication components. Conclusions: Integrating government guidelines with models of behavioral change into a mobile app to support the physical activity of carers is novel. We found that integrating core physical activity guidelines into a co-designed smartphone app with functionality such as a weekly planner and educational material for users is feasible. This work holds promise to fill the gap of effective physical activity solutions for caregivers both during and beyond the COVID-19 pandemic. Further work is now needed to explore the feasibility, acceptability, and usability of the approach in real-world settings. ",
doi="10.2196/27358",
url="https://formative.jmir.org/2021/10/e27358",
url="http://www.ncbi.nlm.nih.gov/pubmed/34406969"
}


@Article{info:doi/10.2196/30990,
author="Betz, E. Marian
and Polzer, Evan
and Nearing, Kathryn
and Knoepke, E. Christopher
and Johnson, L. Rachel
and Meador, Lauren
and Matlock, D. Daniel",
title="Feasibility and Acceptability of a Web-Based Caregiver Decision Aid (Safety in Dementia) for Firearm Access: Pilot Randomized Controlled Trial",
journal="JMIR Form Res",
year="2021",
month="Sep",
day="22",
volume="5",
number="9",
pages="e30990",
keywords="dementia",
keywords="cognitive impairment",
keywords="firearm",
keywords="decision aid",
keywords="caregivers",
keywords="safety",
keywords="feasibility",
keywords="pilot trial",
keywords="Alzheimer disease",
keywords="caregiver support",
abstract="Background: Firearms are common in the households of persons with Alzheimer disease and related dementias (ADRD). Safety in Dementia (SiD) is a free web-based decision aid that was developed to support ADRD caregivers in addressing firearm access. Objective: We aimed to evaluate the feasibility and acceptability of SiD among a web-based sample of ADRD caregivers. Methods: SiD was tested in 2 phases by using participants who were recruited from a web-based convenience sample (Amazon Mechanical Turk participants). In phase 1, caregivers were randomized to view either the intervention (SiD) or the control (Alzheimer's Association materials), and the blinding of participants to the study arms was conducted. In phase 2, caregivers of individuals with ADRD and firearm access were recruited; all of these participants viewed the firearm section of SiD. In both phases, participants viewed SiD independently for as long as they wanted. Measures for evaluating decision-making and SiD acceptability were used, and these were assessed via a self-administered web-based questionnaire. Results: Participants were recruited for phases 1 (n=203) and 2 (n=54). Although it was feasible to collect the study outcome data in a web-based format, in phase 1, there were no significant differences between SiD and the control in terms of decision-making and self-efficacy. The majority (137/203, 67.5\%) of phase 1 participants spent between 5 and 10 minutes reviewing the resources. In phase 2, 61\% (33/54) of participants spent 5 to 10 minutes viewing the firearm section, and 31\% (17/54) spent 10 to 20 minutes viewing this section. Usability and acceptability were high across the phases. Conclusions: SiD represents a new resource for promoting safety among people with dementia, and high acceptability was achieved in a pilot trial. In this sample, SiD performed similarly to Alzheimer's Association materials in supporting decision-making and self-efficacy. ",
doi="10.2196/30990",
url="https://formative.jmir.org/2021/9/e30990",
url="http://www.ncbi.nlm.nih.gov/pubmed/34550082"
}


@Article{info:doi/10.2196/31690,
author="Fleisher, E. Jori
and Hess, Serena
and Sennott, J. Brianna
and Myrick, Erica
and Wallace, Klostermann Ellen
and Lee, Jeanette
and Sanghvi, Maya
and Woo, Katheryn
and Ouyang, Bichun
and Wilkinson, R. Jayne
and Beck, James
and Johnson, J. Tricia
and Hall, A. Deborah
and Chodosh, Joshua",
title="Longitudinal, Interdisciplinary Home Visits Versus Usual Care for Homebound People With Advanced Parkinson Disease: Protocol for a Controlled Trial",
journal="JMIR Res Protoc",
year="2021",
month="Sep",
day="14",
volume="10",
number="9",
pages="e31690",
keywords="home visits",
keywords="telehealth, Parkinson disease",
keywords="homebound",
keywords="palliative care",
keywords="quality of life",
keywords="interdisciplinary care",
keywords="caregiver",
keywords="caregiver strain",
abstract="Background: The current understanding of advanced Parkinson disease (PD) and its treatment is largely based on data from outpatient visits. The most advanced and disabled individuals with PD are disconnected from both care and research. A previous pilot study among older, multimorbid patients with advanced PD demonstrated the feasibility of interdisciplinary home visits to reach the target population, improve care quality, and potentially avoid institutionalization. Objective: The aim of this study protocol is to investigate whether interdisciplinary home visits can prevent a decline in quality of life of patients with PD and prevent worsening of caregiver strain. The protocol also explores whether program costs are offset by savings in health care utilization and institutionalization compared with usual care. Methods: In this single-center, controlled trial, 65 patient-caregiver dyads affected by advanced PD (Hoehn and Yahr stages 3-5 and homebound) are recruited to receive quarterly interdisciplinary home visits over 1 year. The 1-year intervention is delivered by a nurse and a research coordinator, who travel to the home, and it is supported by a movement disorder specialist and social worker (both present by video). Each dyad is compared with age-, sex-, and Hoehn and Yahr stage--matched control dyads drawn from US participants in the longitudinal Parkinson's Outcome Project registry. The primary outcome measure is the change in patient quality of life between baseline and 1 year. Secondary outcome measures include changes in Hoehn and Yahr stage, caregiver strain, self-reported fall frequency, emergency room visits, hospital admissions, and time to institutionalization or death. Intervention costs and changes in health care utilization will be analyzed in a budget impact analysis to explore the potential for model adaptation and dissemination. Results: The protocol was funded in September 2017 and approved by the Rush Institutional Review Board in October 2017. Recruitment began in May 2018 and closed in November 2019 with 65 patient-caregiver dyads enrolled. All study visits have been completed, and analysis is underway. Conclusions: To our knowledge, this is the first controlled trial to investigate the effects of interdisciplinary home visits among homebound individuals with advanced PD and their caregivers. This study also establishes a unique cohort of patients from whom we can study the natural course of advanced PD, its treatments, and unmet needs. Trial Registration: ClinicalTrials.gov NCT03189459; http://clinicaltrials.gov/ct2/show/NCT03189459. International Registered Report Identifier (IRRID): PRR1-10.2196/31690 ",
doi="10.2196/31690",
url="https://www.researchprotocols.org/2021/9/e31690",
url="http://www.ncbi.nlm.nih.gov/pubmed/34238753"
}


@Article{info:doi/10.2196/31211,
author="Fung, Po-Lun Kenneth
and Vahabi, Mandana
and Moosapoor, Masoomeh
and Akbarian, Abdolreza
and Jing-Wen Liu, Jenny
and Wong, Pui-Hing Josephine",
title="Implementation of an Internet-Based Acceptance and Commitment Therapy for Promoting Mental Health Among Migrant Live-in Caregivers in Canada: Protocol",
journal="JMIR Res Protoc",
year="2021",
month="Sep",
day="13",
volume="10",
number="9",
pages="e31211",
keywords="migrant live-in caregiver",
keywords="women",
keywords="mental health",
keywords="acceptance commitment therapy",
keywords="resiliency",
keywords="empowerment",
abstract="Background: Psychological distress, isolation, feelings of powerlessness, and limited social support are realities faced by temporary migrant live-in caregivers in Canada. Furthermore, they experience multiple barriers in accessing mental health services due to their long work hours, limited knowledge of health resources, precarious employment, and immigration status. Objective: The Women Empowerment - Caregiver Acceptance \& Resilience E-Learning (WE2CARE) project is a pilot intervention research project that aims to promote the mental well-being and resiliency of migrant live-in caregivers. The objectives include exploring the effectiveness of this program in achieving the following: (1) reducing psychological distress (depression, anxiety, and stress); (2) promoting committed actions of self-care; and (3) building mutual support social networks. Further, participants' satisfaction with the intervention and their perceived barriers to and facilitators of practicing the self-care strategies embedded in WE2CARE will be examined. Methods: A total of 36 live-in caregivers residing in the Greater Toronto Area will be recruited and randomly assigned to either the intervention or waitlist control group. The intervention group will receive a 6-week web-based psychosocial intervention that will be based on Acceptance and Commitment Therapy (ACT). Standardized self-reported surveys will be administered online preintervention, postintervention, and at 6 weeks postintervention to assess mental distress (Depression, Anxiety and Stress Scale), psychological flexibility (Acceptance and Action Questionnaire), mindfulness (Cognitive and Affective Mindfulness Scale -- Revised), and resilience (Multi-System Model of Resilience Inventory). In addition, two focus groups will be held with a subset of participants to explore their feedback on the utility of the WE2CARE program. Results: WE2CARE was funded in January 2019 for a year. The protocol was approved by the research ethics boards of Ryerson University (REB 2019-036) and the University of Toronto (RIS37623) in February and May 2019, respectively. Data collection started upon ethics approval and was completed by May 2020. A total of 29 caregivers completed the study and 20 participated in the focus groups. Data analyses are in progress and results will be published in 2021. Conclusions: WE2CARE could be a promising approach to reducing stress, promoting resilience, and providing a virtual space for peer emotional support and collaborative learning among socially isolated and marginalized women. The results of this pilot study will inform the adaptation of an ACT-based psychological intervention for online delivery and determine its utility in promoting mental health among disadvantaged and vulnerable populations. International Registered Report Identifier (IRRID): DERR1-10.2196/31211 ",
doi="10.2196/31211",
url="https://www.researchprotocols.org/2021/9/e31211",
url="http://www.ncbi.nlm.nih.gov/pubmed/34515642"
}


@Article{info:doi/10.2196/30472,
author="Yerushalmi, Mor
and Sixsmith, Andrew
and Pollock Star, Ariel
and King, B. David
and O'Rourke, Norm",
title="Ecological Momentary Assessment of Bipolar Disorder Symptoms and Partner Affect: Longitudinal Pilot Study",
journal="JMIR Form Res",
year="2021",
month="Sep",
day="2",
volume="5",
number="9",
pages="e30472",
keywords="bipolar disorder",
keywords="couples",
keywords="dyadic analyses",
keywords="ecological momentary assessment",
keywords="EMA",
keywords="partner",
keywords="relationships",
keywords="mHealth",
keywords="mobile apps",
keywords="mental health",
keywords="depression",
keywords="BPD",
keywords="mood",
abstract="Background: The World Health Organization ranks bipolar disorder (BD) as the 7th leading cause of disability. Although the effects on those with BD are well described, less is reported on the impact of BD on cohabiting partners or any interactions between the two; this requires in vivo data collection measured each day over several months. Objective: We set out to demonstrate the utility of ecological momentary assessment with BD couples measured using yoked smartphone apps. When randomly prompted over time, we assumed distinct patterns of association would emerge between BD symptoms (both depression and hypo/mania) and partner mood (positive and negative affect). Methods: For this pilot study, we recruited an international sample of young and older adults with BD and their cohabiting partners where available. Both participants and partners downloaded separate apps onto their respective smartphones. Within self-specified ``windows of general availability,'' participants with BD were randomly prompted to briefly report symptoms of depression and hypo/mania (ie, BDSx), positive and negative mood (ie, POMS-15; partners), and any important events of the day (both). The partner app was yoked to the participant app so that the former was prompted roughly 30 minutes after the participant with BD or the next morning if outside the partner's specified availability. Results: Four couples provided 312 matched BD symptom and partner mood responses over an average of 123 days (range 65-221 days). Both were GPS- and time-stamped (mean 3:11 hrs between questionnaires, SD 4:51 hrs). Total depression had a small but significant association with positive (r=--.14; P=.02) and negative partner affect (r=.15; P=.01]. Yet total hypo/mania appeared to have no association with positive partner affect (r=--.01; P=.87); instead, negative partner affect was significantly correlated with total hypo/mania (r=.26; P=.01). However, when we look specifically at BD factors, we see that negative partner affect is associated only with affrontive symptoms of hypo/mania (r=.38; P=.01); elation or loss of insight appears unrelated to either positive (r=.10; P=.09) or negative partner affect (r=.02; P=.71). Yet affrontive symptoms of hypo/mania were significantly correlated with negative affect, but only when couples were together (r=.41; P=.01), not when apart (r=.22; P=.12). That is, these angry interpersonal symptoms of hypo/mania appear to be experienced most negatively by spouses when couples are together. Conclusions: These initial findings demonstrate the utility of in vivo ambulatory data collection in longitudinal mental health research. Preliminary analyses suggest different BD symptoms are associated with negative and positive partner mood. These negative effects appear greater for hypo/mania than depressive symptoms, but proximity to the person with BD is important. ",
doi="10.2196/30472",
url="https://formative.jmir.org/2021/9/e30472",
url="http://www.ncbi.nlm.nih.gov/pubmed/34473069"
}


@Article{info:doi/10.2196/27926,
author="Mendez, Waligora Kyra Jennifer
and Budhathoki, Chakra
and Labrique, Bernard Alain
and Sadak, Tatiana
and Tanner, K. Elizabeth
and Han, Ra Hae",
title="Factors Associated With Intention to Adopt mHealth Apps Among Dementia Caregivers With a Chronic Condition: Cross-sectional, Correlational Study",
journal="JMIR Mhealth Uhealth",
year="2021",
month="Aug",
day="31",
volume="9",
number="8",
pages="e27926",
keywords="mHealth applications",
keywords="mobile health",
keywords="intention to adopt mHealth applications",
keywords="dementia caregivers",
keywords="family caregiving",
keywords="chronic disease self-management",
keywords="mobile phone",
abstract="Background: In the United States, nearly 80\% of family caregivers of people with dementia have at least one chronic condition. Dementia caregivers experience high stress and burden that adversely affect their health and self-management. mHealth apps can improve health and self-management among dementia caregivers with a chronic condition. However, mHealth app adoption by dementia caregivers is low, and reasons for this are not well understood. Objective: The purpose of this study is to explore factors associated with dementia caregivers' intention to adopt mHealth apps for chronic disease self-management. Methods: We conducted a cross-sectional, correlational study and recruited a convenience sample of dementia caregivers. We created a survey using validated instruments and collected data through computer-assisted telephone interviews and web-based surveys. Before the COVID-19 pandemic, we recruited dementia caregivers through community-based strategies, such as attending community events. After nationwide closures due to the pandemic, the team focused on web-based recruitment. Multiple logistic regression analyses were used to test the relationships between the independent and dependent variables. Results: Our sample of 117 caregivers had an average age of 53 (SD 17.4) years, 16 (SD 3.3) years of education, and 4 (SD 2.5) chronic conditions. The caregivers were predominantly women (92/117, 78.6\%) and minorities (63/117, 53.8\%), experienced some to extreme income difficulties (64/117, 54.7\%), and were the child or child-in-law (53/117, 45.3\%) of the person with dementia. In logistic regression models adjusting for the control variables, caregiver burden (odds ratio [OR] 1.3, 95\% CI 0.57-2.8; P=.57), time spent caregiving per week (OR 1.7, 95\% CI 0.77-3.9; P=.18), and burden of chronic disease and treatment (OR 2.3, 95\% CI 0.91-5.7; P=.08) were not significantly associated with the intention to adopt mHealth apps. In the final multiple logistic regression model, only perceived usefulness (OR 23, 95\% CI 5.6-97; P<.001) and the interaction term for caregivers' education and burden of chronic disease and treatment (OR 31, 95\% CI 2.2-430; P=.01) were significantly associated with their intention to adopt mHealth apps. Perceived ease of use (OR 2.4, 95\% CI 0.67-8.7; P=.18) and social influence (OR 1.8, 95\% CI 0.58-5.7; P=.31) were not significantly associated with the intention to adopt mHealth apps. Conclusions: When designing mHealth app interventions for dementia caregivers with a chronic condition, it is important to consider caregivers' perceptions about how well mHealth apps can help their self-management and which app features would be most useful for self-management. Caregiving factors may not be relevant to caregivers' intention to adopt mHealth apps. This is promising because mHealth strategies may overcome barriers to caregivers' self-management. Future research should investigate reasons why caregivers with a low education level and low burden of chronic disease and treatment have significantly lower intention to adopt mHealth apps for self-management. ",
doi="10.2196/27926",
url="https://mhealth.jmir.org/2021/8/e27926",
url="http://www.ncbi.nlm.nih.gov/pubmed/34463637"
}


@Article{info:doi/10.2196/30617,
author="Douglas, L. Sara
and Plow, Matthew
and Packer, Tanya
and Lipson, R. Amy
and Lehman, J. Michelle",
title="Psychoeducational Interventions for Caregivers of Persons With Multiple Sclerosis: Protocol for a Randomized Trial",
journal="JMIR Res Protoc",
year="2021",
month="Aug",
day="26",
volume="10",
number="8",
pages="e30617",
keywords="multiple sclerosis",
keywords="caregivers",
keywords="distress",
keywords="anxiety",
keywords="depression",
keywords="psycho-education",
keywords="website",
keywords="coaching",
keywords="mobile phone",
abstract="Background: Of the approximately 1 million people living with multiple sclerosis in the United States, more than half receive informal, unpaid care or support from family or friends (caregivers). These caregivers report high levels of stress, anxiety, and negative emotions. Few researchers have conducted psychoeducational interventions for these caregivers. Objective: This paper presents a protocol for a randomized clinical trial that aims to test the efficacy of two interventions for improving stress, anxiety, depression, and negative emotions for caregivers of persons with multiple sclerosis. Methods: Participants included any self-identified family or friend caregiver of a person with multiple sclerosis. Data collection began in April 2021 and is expected to continue until November 2021. Participants will be randomized to receive either a website-only or a website-coaching intervention delivered for 6 weeks. Data will be collected at baseline, 6 weeks after baseline (after delivery of intervention), and 6 weeks later. Results: The protocol was approved by the institutional review board of the Case Western Reserve University on January 21, 2021 (protocol 20201484). As of May 2021, 66 participants were enrolled. Conclusions: Our findings will have implications for identifying the efficacy of two types of interventions developed for caregivers of persons with multiple sclerosis to reduce negative psychological outcomes associated with caregiving. Trial Registration: ClinicalTrials.gov NCT04662008; http://clinicaltrials.gov/ct2/show/NCT04662008 International Registered Report Identifier (IRRID): DERR1-10.2196/30617 ",
doi="10.2196/30617",
url="https://www.researchprotocols.org/2021/8/e30617",
url="http://www.ncbi.nlm.nih.gov/pubmed/34435971"
}


@Article{info:doi/10.2196/29031,
author="Verloo, Henk
and Lorette, Adrien
and Rosselet Amoussou, Jo{\"e}lle
and Gill{\`e}s de P{\'e}lichy, Estelle
and Matos Queir{\'o}s, Alcina
and von Gunten, Armin
and Perruchoud, Elodie",
title="Using Living Labs to Explore Needs and Solutions for Older Adults With Dementia: Scoping Review",
journal="JMIR Aging",
year="2021",
month="Aug",
day="19",
volume="4",
number="3",
pages="e29031",
keywords="living lab",
keywords="aged",
keywords="dementia",
keywords="cognitive dysfunction",
keywords="long-term care",
keywords="primary health care",
keywords="technology",
keywords="mobile phone",
abstract="Background: Numerous living labs have established a new approach for studying the health, independent living, and well-being of older adults with dementia. Living labs interact with a broad set of stakeholders, including students, academic institutions, private companies, health care organizations, and patient representative bodies and even with other living labs. Hence, it is crucial to identify the types of cocreations that should be attempted and how they can be facilitated through living labs. Objective: This study aims to scope publications that examine all types of living lab activities, exploring the needs and expectations of older adults with dementia and seeking solutions, whether they live in the community or long-term health care facilities (LTHFs). Methods: This scoping review was reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) recommendations for the extension of scoping reviews. We searched six bibliographic databases for publications up to March 2020, and a forward-backward citation chasing was performed. Additional searches were conducted using Google Scholar. The quality of the selected papers was assessed. Results: Of the 5609 articles identified, we read 58 (1.03\%) articles and retained 12 (0.21\%) articles for inclusion and final analysis. All 12 articles presented an innovative product, developed in 4 main living labs, to assist older adults with cognitive disorders or dementia living in the community or LTHFs. The objectives of these studies were to optimize health, quality of life, independent living, home care, and safety of older adults with cognitive disorders or dementia, as well as to support professional and family caregivers or reduce their burdens. The overall methodological quality of the studies ranged from poor to moderate. Conclusions: This scoping review identified several living labs playing a pivotal role in research aimed at older adults with dementia living in the community or LTHFs. However, it also revealed that living labs should conduct more better-quality interventional research to prove the effectiveness of their technological products or service solutions. International Registered Report Identifier (IRRID): RR2-10.2147/SHTT.S233130 ",
doi="10.2196/29031",
url="https://aging.jmir.org/2021/3/e29031",
url="http://www.ncbi.nlm.nih.gov/pubmed/34420916"
}


@Article{info:doi/10.2196/26532,
author="Tremblay, Melanie
and Latulippe, Karine
and Guay, Manon
and Provencher, V{\'e}ronique
and Gigu{\`e}re, Anick
and Poulin, Val{\'e}rie
and Dub{\'e}, V{\'e}ronique
and Giroux, Dominique",
title="Usability of a Co-designed eHealth Prototype for Caregivers: Combination Study of Three Frameworks",
journal="JMIR Hum Factors",
year="2021",
month="Aug",
day="18",
volume="8",
number="3",
pages="e26532",
keywords="usability evaluation",
keywords="co-design",
keywords="research methods",
keywords="caregivers",
keywords="service providers",
keywords="product objectives",
abstract="Background: Co-design (or the participation of users) has shown great potential in the eHealth domain, demonstrating positive results. Nevertheless, the co-design approach cannot guarantee the usability of the system designed, and usability assessment is a complex analysis to perform, as evaluation criteria will differ depending on the usability framework (or set of criteria) used. ISO (International Organization for Standardization) on usability (ISO 9241-210), Nielsen heuristic, and Garrett element of user experience inform different yet complementary aspects of usability. Objective: This study aims to assess the usability and user experience of a co-design prototype by combining 3 complementary frameworks. Methods: To help caregivers provide care for functionally impaired older people, an eHealth tool was co-designed with caregivers, health and social service professionals, and community workers assisting caregivers. The prototype was a website that aims to support the help-seeking process for caregivers (finding resources) and allow service providers to advertise their services (offering resources). We chose an exploratory study method to assess usability in terms of each objective. The first step was to assess users' first impressions of the website. The second was a task scenario with a think-aloud protocol. The final step was a semistructured interview. All steps were performed individually (with a moderator) in a single session. The data were analyzed using 3 frameworks. Results: A total of 10 participants were recruited, 5 for each objective of the website. We were able to identify several usability problems, most of which were located in the information design and interface design dimensions (Garrett framework). Problems in both dimensions were mainly coded as effectiveness and efficiency (ISO framework) and error prevention and match between the systemand the real world (Nielsen heuristic). Conclusions: Our study provided a novel contribution about usability analysis by combining the 3 different models to classify the problems found. This combination provided a holistic understanding of the usability improvements needed. It can also be used to analyze other eHealth products. International Registered Report Identifier (IRRID): RR2-10.2196/11634 ",
doi="10.2196/26532",
url="https://humanfactors.jmir.org/2021/3/e26532",
url="http://www.ncbi.nlm.nih.gov/pubmed/34406123"
}


@Article{info:doi/10.2196/22608,
author="Oakley-Girvan, Ingrid
and Davis, Watkins Sharon
and Kurian, Allison
and Rosas, G. Lisa
and Daniels, Jena
and Palesh, Gronskaya Oxana
and Mesia, J. Rachel
and Kamal, H. Arif
and Longmire, Michelle
and Divi, Vasu",
title="Development of a Mobile Health App (TOGETHERCare) to Reduce Cancer Care Partner Burden: Product Design Study",
journal="JMIR Form Res",
year="2021",
month="Aug",
day="13",
volume="5",
number="8",
pages="e22608",
keywords="cancer",
keywords="oncology",
keywords="mHealth",
keywords="caregiver",
keywords="cancer survivor",
keywords="mobile app",
keywords="smartphone",
keywords="feasibility",
keywords="caregiver burden",
keywords="symptom reporting",
abstract="Background: Approximately 6.1 million adults in the United States serve as care partners for cancer survivors. Studies have demonstrated that engaging cancer survivors and their care partners through technology-enabled structured symptom collection has several benefits. Given the high utilization of mobile technologies, even among underserved populations and in low resource areas, mobile apps may provide a meaningful access point for all stakeholders for symptom management. Objective: We aimed to develop a mobile app incorporating user preferences to enable cancer survivors' care partners to monitor the survivors' health and to provide care partner resources. Methods: An iterative information gathering process was conducted that included (1) discussions with 138 stakeholders to identify challenges and gaps in survivor home care; (2) semistructured interviews with clinicians (n=3), cancer survivors (n=3), and care partners (n=3) to identify specific needs; and (3) a 28-day feasibility field test with seven care partners. Results: Health professionals noted the importance of identifying early symptoms of adverse events. Survivors requested modules on medication, diet, self-care, reminders, and a version in Spanish. Care partners preferred to focus primarily on the patient's health and not their own. The app was developed incorporating quality-of-life surveys and symptom reporting, as well as resources on home survivor care. Early user testing demonstrated ease of use and app feasibility. Conclusions: TOGETHERCare, a novel mobile app, was developed with user input to track the care partner's health and report on survivor symptoms during home care. The following two clinical benefits emerged: (1) reduced anxiety among care partners who use the app and (2) the potential for identifying survivor symptoms noted by the care partner, which might prevent adverse events. Trial Registration: ClinicalTrials.gov NCT04018677; https://clinicaltrials.gov/ct2/show/NCT04018677 ",
doi="10.2196/22608",
url="https://formative.jmir.org/2021/8/e22608",
url="http://www.ncbi.nlm.nih.gov/pubmed/34398787"
}


@Article{info:doi/10.2196/27504,
author="Milne-Ives, Madison
and Neill, Sarah
and Bayes, Natasha
and Blair, Mitch
and Blewitt, Jane
and Bray, Lucy
and Carrol, D. Enitan
and Carter, Bernie
and Dawson, Rob
and Dimitri, Paul
and Lakhanpaul, Monica
and Roland, Damian
and Tavare, Alison
and Meinert, Edward
and ",
title="Impact of Digital Educational Interventions to Support Parents Caring for Acutely Ill Children at Home and Factors That Affect Their Use: Protocol for a Systematic Review",
journal="JMIR Res Protoc",
year="2021",
month="Jun",
day="30",
volume="10",
number="6",
pages="e27504",
keywords="acute disease",
keywords="telemedicine",
keywords="child",
keywords="pediatrics",
keywords="childhood disease",
keywords="childhood illness",
keywords="health education",
keywords="health literacy",
keywords="help-seeking behavior",
keywords="child health",
keywords="digital intervention",
keywords="mHealth",
keywords="primary care",
keywords="sick child",
abstract="Background: Urgent and emergency care health services are overburdened, and the use of these services by acutely ill infants and children is increasing. A large proportion of these visits could be sufficiently addressed by other health care professionals. Uncertainty about the severity of a child's symptoms is one of many factors that play a role in parents' decisions to take their children to emergency services, demonstrating the need for improved support for health literacy. Digital interventions are a potential tool to improve parents' knowledge, confidence, and self-efficacy at managing acute childhood illness. However, existing systematic reviews related to this topic need to be updated and expanded to provide a contemporary review of the impact, usability, and limitations of these solutions. Objective: The purpose of this systematic review protocol is to present the method for an evaluation of the impact, usability, and limitations of different types of digital educational interventions to support parents caring for acutely ill children at home. Methods: The review will be structured using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA-P) and Population, Intervention, Comparator, and Outcome (PICO) frameworks. Five databases will be systematically searched for studies published in English during and after 2014: Medline, EMBASE, CINAHL, APA PsycNet, and Web of Science. Two reviewers will independently screen references' titles and abstracts, select studies for inclusion based on the eligibility criteria, and extract the data into a standardized form. Any disagreements will be discussed and resolved by a third reviewer if necessary. Risk of bias of all studies will be assessed using the Mixed-Methods Appraisal Tool (MMAT), and a descriptive analysis will be used to evaluate the outcomes reported. Results: The systematic review will commence during 2021. Conclusions: This systematic review will summarize the impact, usability, and limitations of digital interventions for parents with acutely ill children. It will provide an overview of the field; identify reported impacts on health and behavioral outcomes as well as parental knowledge, satisfaction, and decision making; and identify the factors that affect use to help inform the development of more effective and sustainable interventions. International Registered Report Identifier (IRRID): PRR1-10.2196/27504 ",
doi="10.2196/27504",
url="https://www.researchprotocols.org/2021/6/e27504",
url="http://www.ncbi.nlm.nih.gov/pubmed/34228628"
}


@Article{info:doi/10.2196/25671,
author="Rottenberg, Shelley
and Williams, Allison",
title="Web-Based Delivery of the Caregiving Essentials Course for Informal Caregivers of Older Adults in Ontario: Mixed Methods Evaluation Study",
journal="JMIR Aging",
year="2021",
month="Jun",
day="15",
volume="4",
number="2",
pages="e25671",
keywords="informal caregivers",
keywords="family caregivers",
keywords="older adults",
keywords="elder care",
keywords="web-based intervention",
keywords="online intervention",
keywords="online course",
keywords="health education",
keywords="eHealth",
keywords="evaluation",
abstract="Background: Many informal caregivers of older adults have limited time because of the number of responsibilities that their caregiving role entails. This population often experiences high levels of burden due to the stressful nature of their work and are vulnerable to developing negative psychological health outcomes. Easily accessible and flexible knowledge interventions are needed to alleviate the burden and stress experienced by this group. Objective: This study aims to evaluate the acceptability of the web-based delivery of the Caregiving Essentials course for informal caregivers of older adults. Both the strengths and limitations of using a web-based platform to provide information and resources were explored to see whether the method of delivery enhanced or hindered the overall course experience for participants. Methods: A mixed methodology of web-based pre- (n=111) and postcourse surveys (n=39) and telephone interviews (n=26) was used to collect both qualitative and quantitative data from participants. Individual interviews were also conducted with key stakeholders (n=6), and a focus group was conducted with nursing students (n=5) who were involved in the project. Results: The web-based delivery of the course provided participants with greater accessibility to the course because it allowed them to work independently through the modules at their own pace wherever and whenever. The discussion boards were also identified as a major strength because of the opportunity for social interaction and the sense of community that many felt through sharing their experiences. Some barriers to participation included age-related factors, issues with navigating aspects of the course, and concerns about privacy and anonymity. Some key suggestions included more engaging methods of web-based communication and the reorganization of the module content to reduce the amount of text and streamline information. Conclusions: The web-based delivery of Caregiving Essentials appeared to enhance the overall course experience by increasing accessibility and allowing participants to interact with the learning materials and other caregivers. The findings from this evaluation can be used to create and improve the web-based delivery of both the current and emerging interventions for caregivers. ",
doi="10.2196/25671",
url="https://aging.jmir.org/2021/2/e25671",
url="http://www.ncbi.nlm.nih.gov/pubmed/34128815"
}


@Article{info:doi/10.2196/25968,
author="Kim, Gyungha
and Jeon, Hwawoo
and Park, Kee Sung
and Choi, Suk Yong
and Lim, Yoonseob",
title="A Care Knowledge Management System Based on an Ontological Model of Caring for People With Dementia: Knowledge Representation and Development Study",
journal="J Med Internet Res",
year="2021",
month="Jun",
day="8",
volume="23",
number="6",
pages="e25968",
keywords="caregiver",
keywords="caregiver for person with dementia",
keywords="knowledge model",
keywords="ontology",
keywords="knowledge management",
keywords="semantic reasoning",
abstract="Background: Caregivers of people with dementia find it extremely difficult to choose the best care method because of complex environments and the variable symptoms of dementia. To alleviate this care burden, interventions have been proposed that use computer- or web-based applications. For example, an automatic diagnosis of the condition can improve the well-being of both the person with dementia and the caregiver. Other interventions support the individual with dementia in living independently. Objective: The aim of this study was to develop an ontology-based care knowledge management system for people with dementia that will provide caregivers with a care guide suited to the environment and to the individual patient's symptoms. This should also enable knowledge sharing among caregivers. Methods: To build the care knowledge model, we reviewed existing ontologies that contain concepts and knowledge descriptions relating to the care of those with dementia, and we considered dementia care manuals. The basic concepts of the care ontology were confirmed by experts in Korea. To infer the different care methods required for the individual dementia patient, the reasoning rules as defined in Semantic Web Rule Languages and Prolog were utilized. The accuracy of the care knowledge in the ontological model and the usability of the proposed system were evaluated by using the Pellet reasoner and OntOlogy Pitfall Scanner!, and a survey and interviews were conducted with caregivers working in care centers in Korea. Results: The care knowledge model contains six top-level concepts: care knowledge, task, assessment, person, environment, and medical knowledge. Based on this ontological model of dementia care, caregivers at a dementia care facility in Korea were able to access the care knowledge easily through a graphical user interface. The evaluation by the care experts showed that the system contained accurate care knowledge and a level of assessment comparable to normal assessment tools. Conclusions: In this study, we developed a care knowledge system that can provide caregivers with care guides suited to individuals with dementia. We anticipate that the system could reduce the workload of caregivers. ",
doi="10.2196/25968",
url="https://www.jmir.org/2021/6/e25968",
url="http://www.ncbi.nlm.nih.gov/pubmed/34100762"
}


@Article{info:doi/10.2196/25006,
author="Ruggiano, Nicole
and Brown, L. Ellen
and Roberts, Lisa
and Framil Suarez, Victoria C.
and Luo, Yan
and Hao, Zhichao
and Hristidis, Vagelis",
title="Chatbots to Support People With Dementia and Their Caregivers: Systematic Review of Functions and Quality",
journal="J Med Internet Res",
year="2021",
month="Jun",
day="3",
volume="23",
number="6",
pages="e25006",
keywords="dementia",
keywords="caregivers",
keywords="chatbots",
keywords="conversation agents",
keywords="mobile apps",
keywords="mobile phone",
abstract="Background: Over the past decade, there has been an increase in the use of information technologies to educate and support people with dementia and their family caregivers. At the same time, chatbot technologies have become increasingly popular for use by the public and have been identified as having benefits for health care delivery. However, little is known about how chatbot technologies may benefit people with dementia and their caregivers. Objective: This study aims to identify the types of current commercially available chatbots that are designed for use by people with dementia and their caregivers and to assess their quality in terms of features and content. Methods: Chatbots were identified through a systematic search on Google Play Store, Apple App Store, Alexa Skills, and the internet. An evidence-based assessment tool was used to evaluate the features and content of the identified apps. The assessment was conducted through interrater agreement among 4 separate reviewers. Results: Of the 505 initial chatbots identified, 6 were included in the review. The chatbots assessed varied significantly in terms of content and scope. Although the chatbots were generally found to be easy to use, some limitations were noted regarding their performance and programmed content for dialog. Conclusions: Although chatbot technologies are well established and commonly used by the public, their development for people with dementia and their caregivers is in its infancy. Given the successful use of chatbots in other health care settings and for other applications, there are opportunities to integrate this technology into dementia care. However, more evidence-based chatbots that have undergone end user evaluation are needed to evaluate their potential to adequately educate and support these populations. ",
doi="10.2196/25006",
url="https://www.jmir.org/2021/6/e25006",
url="http://www.ncbi.nlm.nih.gov/pubmed/34081019"
}


@Article{info:doi/10.2196/24724,
author="Christie, Liane Hannah
and Boots, Maria Lizzy Mitzy
and Hermans, Ivo
and Govers, Mark
and Tange, Johannes Huibert
and Verhey, Josef Frans Rochus
and de Vugt, Majolein",
title="Business Models of eHealth Interventions to Support Informal Caregivers of People With Dementia in the Netherlands: Analysis of Case Studies",
journal="JMIR Aging",
year="2021",
month="Jun",
day="3",
volume="4",
number="2",
pages="e24724",
keywords="eHealth",
keywords="dementia",
keywords="caregiving",
keywords="implementation",
keywords="business modeling",
abstract="Background: In academic research contexts, eHealth interventions for caregivers of people with dementia have shown ample evidence of effectiveness. However, they are rarely implemented in practice, and much can be learned from their counterparts (commercial, governmental, or other origins) that are already being used in practice. Objective: This study aims to examine a sample of case studies of eHealth interventions to support informal caregivers of people with dementia that are currently used in the Netherlands; to investigate what strategies are used to ensure the desirability, feasibility, viability, and sustainability of the interventions; and to apply the lessons learned from this practical, commercial implementation perspective to academically developed eHealth interventions for caregivers of people with dementia. Methods: In step 1, experts (N=483) in the fields of dementia and eHealth were contacted and asked to recommend interventions that met the following criteria: delivered via the internet; suitable for informal caregivers of people with dementia; accessible in the Netherlands, either in Dutch or in English; and used in practice. The contacted experts were academics working on dementia and psychosocial innovations, industry professionals from eHealth software companies, clinicians, patient organizations, and people with dementia and their caregivers. In step 2, contact persons from the suggested eHealth interventions participated in a semistructured telephone interview. The results were analyzed using a multiple case study methodology. Results: In total, the response rate was 7.5\% (36/483), and 21 eHealth interventions for caregivers of people with dementia were recommended. Furthermore, 43\% (9/21) of the interventions met all 4 criteria and were included in the sample for the case study analysis. Of these 9 interventions, 4 were found to have developed sustainable business models and 5 were implemented in a more exploratory manner and relied on research grants to varying extents, although some had also developed preliminary business models. Conclusions: These findings suggest that the desirability, feasibility, and viability of eHealth interventions for caregivers of people with dementia are linked to their integration into larger structures, their ownership and support of content internally, their development of information and communication technology services externally, and their offer of fixed, low pricing. The origin of the case studies was also important, as eHealth interventions that had originated in an academic research context less reliably found their way to sustainable implementation. In addition, careful selection of digital transformation strategies, more intersectoral cooperation, and more funding for implementation and business modeling research are recommended to help future developers bring eHealth interventions for caregivers of people with dementia into practice. ",
doi="10.2196/24724",
url="https://aging.jmir.org/2021/2/e24724",
url="http://www.ncbi.nlm.nih.gov/pubmed/34081009"
}


@Article{info:doi/10.2196/16703,
author="Lou, Weiqun Vivian
and Tang, Man Jennifer Yee
and Lau, Kai Gary Kui
and Lum, Sang Terry Yat
and Fong, Kenneth
and Ko, Tung Rachel Wai
and Cheng, Man Clio Yuen
and Fu, Yinqi Joyce
and Chow, Lun Eddie Siu
and Chu, Kwok Angus Chun
and Hui, Elsie
and Ng, Ling Winnie Wing
and Chan, Wai Felix Hon
and Luk, C. C.
and Kwok, K. T.",
title="Effectiveness of a Two-Tier Family-Oriented Intervention in Enhancing the Family Functioning and Care Capacity of the Family Caregivers of Stroke Survivors: Protocol for a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2021",
month="May",
day="28",
volume="10",
number="5",
pages="e16703",
keywords="two-tier family-oriented intervention",
keywords="family functioning",
keywords="family caregivers",
keywords="stroke survivors",
keywords="randomized controlled trial",
abstract="Background: Stroke has profound impacts on families. Often, family members, including stroke survivors and the person who takes up the role of the primary caregiver, would encounter demands on finances, rehabilitation arrangement, and even conflicts. Hence, a family-oriented intervention is expected to enable families to rebuild internal and external resources to achieve optimal rehabilitation and community reintegration. Objective: This study aims to describe a design of a two-tier family-oriented care management intervention for enhancing the family functioning and care capacity of the caregivers of stroke survivors. Methods: The two-tier care management intervention was guided by a standardized protocol conducted by trained professional care managers (first tier) with the support of trained volunteers (second tier), which lasted for 8-12 weeks. Participants were recruited through collaborating hospitals according to inclusion and exclusion criteria. In order to examine the effectiveness and cost-effectiveness of the two-tier care management intervention, a two-arm randomization multicenter study was designed, including an active comparison group, which was guided by a standardized protocol conducted by trained volunteers. Dyadic participants, including both stroke survivors and their primary caregivers for both groups, were invited to participate in a questionnaire survey using standardized and purposefully developed measures 3 times: before the intervention, immediately after the intervention, and 2 months after the intervention. The primary outcome was family functioning measured by the Family Role Performance Scale and Family Assessment Device-General Functioning Scale. The secondary outcomes included caregiving burden, depressive symptoms, care management strategies, and the incremental cost-effectiveness ratio. Results: Recruitment began in January 2017 and was completed at the end of April 2019. Data collection was completed at the end of March 2020. As of March 2020, enrollment has been completed (n=264 stroke caregivers). A total of 200 participants completed the baseline questionnaires. We aim to publish the results by mid-2021. Conclusions: This study successfully developed a two-tier care management protocol that aims to enhance the family functioning of the caregivers of stroke survivors. Guided by a standardized protocol, this family-oriented two-tier intervention protocol was found to be feasible among Chinese families. Trial Registration: ClinicalTrials.gov NCT03034330; https://ichgcp.net/clinical-trials-registry/NCT03034330 International Registered Report Identifier (IRRID): RR1-10.2196/16703 ",
doi="10.2196/16703",
url="https://www.researchprotocols.org/2021/5/e16703",
url="http://www.ncbi.nlm.nih.gov/pubmed/34047707"
}


@Article{info:doi/10.2196/25679,
author="Lwin, O. May
and Sheldenkar, Anita
and Panchapakesan, Chitra",
title="A Digital Mobile Community App for Caregivers in Singapore: Predevelopment and Usability Study",
journal="JMIR Nursing",
year="2021",
month="May",
day="26",
volume="4",
number="2",
pages="e25679",
keywords="caregiving",
keywords="technological solution",
keywords="mobile application",
keywords="easy communication",
keywords="caregiver",
keywords="mobile app",
keywords="communication",
keywords="elderly",
keywords="aging population",
keywords="internet technology",
keywords="community network",
keywords="network",
abstract="Background: With increasing life expectancy and aging populations, the global prevalence of chronic diseases and the long-term care required for people with comorbidities is rising. This has led to an ever-growing need for caregiving. Previous literature has shown that caregivers face problems of isolation and loneliness. However, many health organizations mainly focus their efforts on in-person community groups that require participants to meet physically. This is not always convenient or accessible for caregivers who are often juggling caring for their care recipient with family and work responsibilities. Objective: With medical advancements such as the proliferation of mobile phones and internet technology, caregivers may have opportunities for easier access to resources and support. Technological innovations could help empower the caregiving community to seek assistance for improving their quality of life at their convenience. A community network app called Caregivers' Circle was conceptualized in response to the needs of the caregivers on a day-to-day caregiving journey. This paper traces the predevelopment inquiry and technical details of this app to provide a clear understanding of its implementation along with a usability study to gauge user opinion of the app within Singapore. Methods: A predevelopment survey was conducted to identify specific needs of caregivers and gaps in the currently available web-based community networks. The survey consisted of questions on demographical data, health-related issues of the care recipient, mental and physical health--related issues of the caregiver, digital media use, information seeking, and support. This pre--app development survey was completed by 103 caregivers. Qualitative enquiries were also conducted with caregivers within Singapore to identify issues related to caregiving, support provided, and what caregivers would want from a caregiving mobile app. Results: From the feedback garnered from the caregivers, the developers were able to identify several caregivers' needs and gaps within the current support networks. This feedback was integrated into the mobile app called Caregivers' Circle upon development. The features of this app include a public forum for community discussions, a marketplace to buy and sell items, care groups to hold private discussions with friends or other users of the app, and a friends feature to search and add new caregiving friends. Conclusions: In general, the caregivers liked the Caregivers' Circle app and were confident that this app could help them have a better quality of life. The Caregivers' Circle app is unique in its integrated approach. The integration of many features that caregivers need on a daily basis into an easy app can save their time as well as help them navigate their life smoothly. ",
doi="10.2196/25679",
url="https://nursing.jmir.org/2021/2/e25679",
url="http://www.ncbi.nlm.nih.gov/pubmed/34345796"
}


@Article{info:doi/10.2196/26431,
author="Goodman-Casanova, Marian Jessica
and Dura-Perez, Elena
and Guerrero-Perti{\~n}ez, Gloria
and Barnestein-Fonseca, Pilar
and Guzman-Parra, Jose
and Vega-Nu{\~n}ez, Amanda
and Varela-Moreno, Esperanza
and Cuesta-Vargas, Antonio
and Mayoral-Cleries, Fermin",
title="Cognitive Outcomes During COVID-19 Confinement Among Older People and Their Caregivers Using Technologies for Dementia: Protocol for an Observational Cohort Study",
journal="JMIR Res Protoc",
year="2021",
month="May",
day="18",
volume="10",
number="5",
pages="e26431",
keywords="caregiver",
keywords="cognition",
keywords="cognitive impairment",
keywords="cohort",
keywords="COVID-19",
keywords="dementia",
keywords="older people",
keywords="informal caregivers",
keywords="information and communications technologies",
keywords="isolation",
keywords="older adults",
keywords="outcome",
keywords="quality of life",
keywords="social isolation",
keywords="stress",
keywords="technologies",
abstract="Background: The COVID-19 pandemic has led to worldwide implementation of unprecedented restrictions to control its rapid spread and mitigate its impact. The Spanish government has enforced social distancing, quarantine, and home confinement measures. Such restrictions on activities of daily life and separation from loved ones may lead to social isolation and loneliness with health-related consequences among community-dwelling older adults with mild cognitive impairment or mild dementia and their caregivers. Additionally, inadequate access to health care and social support services may aggravate chronic conditions. Home-based technological interventions have emerged for combating social isolation and loneliness, while simultaneously preventing the risk of virus exposure. Objective: The aim of this cohort study is to explore, analyze, and determine the impact of social isolation on (1) cognition, quality of life, mood, technophilia, and perceived stress among community-dwelling older adults with mild cognitive impairment or mild dementia and on the caregiver burden; (2) access to and utilization of health and social care services; and (3) cognitive, social, and entertainment-related uses of information and communication technologies. Methods: This study will be conducted in M{\'a}laga (Andaluc{\'i}a, Spain). In total 200 dyads, consisting of a person with mild cognitive impairment or mild dementia and his/her informal caregiver, will be contacted by telephone. Potential respondents will be participants of the following clinical trials: support, monitoring, and reminder technology for mild dementia (n=100) and television-based assistive integrated service to support European adults living with mild dementia or mild cognitive impairment (n=100). Results: As of May 2021, a total of 153 participants have been enrolled and assessed during COVID-19 confinement, of whom 67 have been assessed at 6 months of enrollment. Changes in the mean values of the variables will be analyzed relative to baseline findings of previous studies with those during and after confinement, using repeated-measures analysis of variance or the nonparametric Friedman test, as appropriate. The performance of multivariate analysis of covariance (ANCOVA) to introduce potential covariates will also be considered. Values of 95\% CI will be used. Conclusions: If our hypothesis is accepted, these findings will demonstrate the negative impact of social isolation owing to COVID-19 confinement on cognition, quality of life, mood, and perceived stress among community-dwelling older adults with mild cognitive impairment and mild dementia, the impact on technophilia, caregiver burden, the access to and utilization of health and social care services, and the cognitive, social, and entertainment-related use of information and communication technologies during and after COVID-19 confinement. Trial Registration: ClinicalTrials.gov NCT04385797; https://clinicaltrials.gov/ct2/show/NCT04385797 International Registered Report Identifier (IRRID): DERR1-10.2196/26431 ",
doi="10.2196/26431",
url="https://www.researchprotocols.org/2021/5/e26431",
url="http://www.ncbi.nlm.nih.gov/pubmed/33909588"
}


@Article{info:doi/10.2196/25503,
author="Sezgin, Emre
and Noritz, Garey
and Lin, Simon
and Huang, Yungui",
title="Feasibility of a Voice-Enabled Medical Diary App (SpeakHealth) for Caregivers of Children With Special Health Care Needs and Health Care Providers: Mixed Methods Study",
journal="JMIR Form Res",
year="2021",
month="May",
day="11",
volume="5",
number="5",
pages="e25503",
keywords="children with special health care needs",
keywords="care management",
keywords="care coordination",
keywords="voice-enabled mobile app",
keywords="health information technology",
keywords="voice assistant",
keywords="voice interaction",
keywords="mobile phone",
abstract="Background: Children with special health care needs (CSHCN) require more than the usual care management and coordination efforts from caregivers and health care providers (HCPs). Health information and communication technologies can potentially facilitate these efforts to increase the quality of care received by CSHCN. Objective: In this study, we aim to assess the feasibility of a voice-enabled medical diary app (SpeakHealth) by investigating its potential use among caregivers and HCPs. Methods: Following a mixed methods approach, caregivers of CSHCN were interviewed (n=10) and surveyed (n=86) about their care management and communication technology use. Only interviewed participants were introduced to the SpeakHealth app prototype, and they tested the app during the interview session. In addition, we interviewed complex care HCPs (n=15) to understand their perception of the value of a home medical diary such as the SpeakHealth app. Quantitative data were analyzed using descriptive statistics and correlational analyses. Theoretical thematic analysis was used to analyze qualitative data. Results: The survey results indicated a positive attitude toward voice-enabled technology and features; however, there was no strong correlation among the measured items. The caregivers identified communication, information sharing, tracking medication, and appointments as fairly and highly important features of the app. Qualitative analysis revealed the following two overarching themes: enablers and barriers in care communication and enablers and barriers in communication technologies. The subthemes included parent roles, care communication technologies, and challenges. HCPs found the SpeakHealth app to be a promising tool for timely information collection that could be available for sharing information with the health system. Overall, the findings demonstrated a variety of needs and challenges for caregivers of CSHCN and opportunities for voice-enabled, interactive medical diary apps in care management and coordination. Caregivers fundamentally look for better information sharing and communication with HCPs. Health care and communication technologies can potentially improve care communication and coordination in addressing the patient and caregiver needs. Conclusions: The perspectives of caregivers and providers suggested both benefits and challenges in using the SpeakHealth app for medical note-taking and tracking health events at home. Our findings could inform researchers and developers about the potential development and use of a voice-enabled medical diary app. ",
doi="10.2196/25503",
url="https://formative.jmir.org/2021/5/e25503",
url="http://www.ncbi.nlm.nih.gov/pubmed/33865233"
}


@Article{info:doi/10.2196/25928,
author="LaMonica, M. Haley
and Roberts, E. Anna
and Davenport, A. Tracey
and Hickie, B. Ian",
title="Evaluation of the Usability and Acceptability of the InnoWell Platform as Rated by Older Adults: Survey Study",
journal="JMIR Aging",
year="2021",
month="Apr",
day="21",
volume="4",
number="2",
pages="e25928",
keywords="older adults",
keywords="mental health",
keywords="technology",
keywords="community-based participatory research",
keywords="stakeholder participation",
keywords="smartphone",
keywords="mobile phone",
abstract="Background: As the global population ages, there is increased interest in developing strategies to promote health and well-being in later life, thus enabling continued productivity, social engagement, and independence. As older adults use technologies with greater frequency, proficiency, and confidence, health information technologies (HITs) now hold considerable potential as a means to enable broader access to tools and services for the purposes of screening, treatment, monitoring, and ongoing maintenance of health for this group. The InnoWell Platform is a digital tool co-designed with lived experience to facilitate better outcomes by enabling access to a comprehensive multidimensional assessment, the results of which are provided in real time to enable consumers to make informed decisions about clinical and nonclinical care options independently or in collaboration with a health professional. Objective: This study aims to evaluate the usability and acceptability of a prototype of the InnoWell Platform, co-designed and configured with and for older adults, using self-report surveys. Methods: Participants were adults 50 years and older who were invited to engage with the InnoWell Platform naturalistically (ie, at their own discretion) for a period of 90 days. In addition, they completed short web-based surveys at baseline regarding their background, health, and mental well-being. After 90 days, participants were asked to complete the System Usability Scale to evaluate the usability and acceptability of the prototyped InnoWell Platform, with the aim of informing the iterative redesign and development of this digital tool before implementation within a health service setting. Results: A total of 19 participants consented to participate in the study; however, only the data from the 16 participants (mean age 62.8 years, SD 7.5; range 50-72) who completed at least part of the survey at 90 days were included in the analyses. Participants generally reported low levels of psychological distress and good mental well-being. In relation to the InnoWell Platform, the usability scores were suboptimal. Although the InnoWell Platform was noted to be easy to use, participants had difficulty identifying the relevance of the tool for their personal circumstances. Ease of use, the comprehensive nature of the assessment tools, and the ability to track progress over time were favored features of the InnoWell Platform, whereas the need for greater personalization and improved mobile functionality were cited as areas for improvement. Conclusions: HITs such as the InnoWell Platform have tremendous potential to improve access to cost-effective and low-intensity interventions at scale to improve and maintain mental health and well-being in later life. However, to promote adoption of and continued engagement with such tools, it is essential that these HITs are personalized and relevant for older adult end users, accounting for differences in background, clinical profiles, and levels of need. ",
doi="10.2196/25928",
url="https://aging.jmir.org/2021/2/e25928",
url="http://www.ncbi.nlm.nih.gov/pubmed/33881410"
}


@Article{info:doi/10.2196/21808,
author="D{\'e}sormeaux-Moreau, Marjorie
and Michel, Charlie-Maude
and Valli{\`e}res, M{\'e}lanie
and Racine, Maryse
and Poulin-Paquet, Myriame
and Lacasse, Delphine
and Gionet, Pascale
and Genereux, Melissa
and Lachiheb, Wael
and Provencher, V{\'e}ronique",
title="Mobile Apps to Support Family Caregivers of People With Alzheimer Disease and Related Dementias in Managing Disruptive Behaviors: Qualitative Study With Users Embedded in a Scoping Review",
journal="JMIR Aging",
year="2021",
month="Apr",
day="16",
volume="4",
number="2",
pages="e21808",
keywords="disruptive behaviors management",
keywords="dementia",
keywords="caregivers",
keywords="mobile phone",
keywords="app",
keywords="scoping review",
keywords="focus group",
keywords="mHealth",
keywords="neurocognitive disorder",
abstract="Background: People with Alzheimer disease and related dementias often display disruptive behaviors (eg, aggression, wandering, and restlessness), which increase family caregivers' burden of care. However, there are few tools currently available to help these caregivers manage disruptive behaviors. Mobile apps could meet this need, but to date little is known about them. Objective: The aims of our study were to identify existing mobile apps designed to support family caregivers of people with Alzheimer disease and related dementias in managing disruptive behaviors; explore whether family caregivers view these mobile apps as relevant to meeting their needs and as useful in managing disruptive behaviors; and document the types of mobile apps that are of interest and appeal to most family caregivers (with regard to format, ergonomics, and clarity). Methods: A review of mobile apps initially conducted in February 2018 was updated in March 2019 with 2 platforms (App Store [Apple Inc.] and Google Play [Google]). The selected apps were first analyzed independently by 3 raters (2 students and 1 researcher) for each of the platforms. A focus group discussion was then held with 4 family caregivers to explore their perceptions of the apps according to their needs and interests. The content of the discussion was analyzed. Results: Initially, 7 of 118 apps identified met the inclusion criteria. An eighth app, recommended by one of the knowledge users, was added later. Four family caregivers (women aged between 58 and 78 years) participated in the discussion. Participants expressed a preference for easy-to-understand apps that provide concrete intervention strategies. They reported being most inclined to use two apps, Dementia Advisor and DTA Behaviours. Conclusions: Few mobile apps on the market meet the needs of family caregivers in terms of content and usability. Our results could help to address this gap by identifying what family caregivers deem relevant in a mobile app to help them manage disruptive behaviors. ",
doi="10.2196/21808",
url="https://aging.jmir.org/2021/2/e21808",
url="http://www.ncbi.nlm.nih.gov/pubmed/33861207"
}


@Article{info:doi/10.2196/26875,
author="Wrede, Christian
and Braakman-Jansen, Annemarie
and van Gemert-Pijnen, Lisette",
title="Requirements for Unobtrusive Monitoring to Support Home-Based Dementia Care: Qualitative Study Among Formal and Informal Caregivers",
journal="JMIR Aging",
year="2021",
month="Apr",
day="12",
volume="4",
number="2",
pages="e26875",
keywords="in-home monitoring",
keywords="ambient assisted living",
keywords="assistive technologies",
keywords="dementia",
keywords="home care",
keywords="informal care",
keywords="aging in place",
abstract="Background: Due to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia. Objective: The objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia. Methods: A combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-K{\aa}reborn. Results: Formal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context. Conclusions: Despite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care. ",
doi="10.2196/26875",
url="https://aging.jmir.org/2021/2/e26875",
url="http://www.ncbi.nlm.nih.gov/pubmed/33843596"
}


@Article{info:doi/10.2196/24628,
author="Rai, Kaur Harleen
and Schneider, Justine
and Orrell, Martin",
title="An Individual Cognitive Stimulation Therapy App for People With Dementia and Their Carers: Protocol for a Feasibility Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2021",
month="Apr",
day="8",
volume="10",
number="4",
pages="e24628",
keywords="dementia",
keywords="cognitive stimulation therapy",
keywords="touchscreen technology",
keywords="feasibility trial",
keywords="quality of life",
keywords="mHealth",
keywords="apps",
abstract="Background: There is a need for more resources to support the cognition and quality of life of people with dementia. The individual cognitive stimulation therapy (iCST) app aims to provide cognitive stimulation and social interaction to people with dementia and carers through interactive touchscreen technology. The iCST app has been developed according to the principles of CST and iCST, which have previously shown to improve the cognition and quality of life of people with dementia and benefit the relationship between the person with dementia and his/her carer. The iCST app has also shown to improve the quality of the carer's life. Objective: The aim of this study is to evaluate the usability of the iCST app intervention and the feasibility of conducting a full-scale randomized controlled trial (RCT) to assess the clinical effectiveness of the iCST app intervention compared to that of treatment-as-usual for people with mild-to-moderate dementia. Methods: We aim to recruit 60 people with mild-to-moderate dementia and their informal carers as dyads in a multi-center feasibility RCT with a treatment-as-usual control group. Both parties must be able to provide informed consent and participate in the intervention. Dyads will complete a baseline assessment that will include cognition and quality of life measures and they will subsequently be randomized (1:1) to the iCST app intervention in addition to usual care or to usual care only. All participants will be followed up at 5 weeks and at 11 weeks after the baseline assessments. A range of feasibility outcomes will be assessed, including recruitment and retention rates, intervention fidelity and usability, and acceptability of the outcome measures. A sample of the experimental group will be invited to a semistructured posttrial interview to further examine the experience of using the iCST app. Results: This study received funding in May 2015 and obtained ethical approval in March 2018. Data collection began in November 2018 and was completed in March 2020 with a total of 61 dyads recruited. Data analyses are in progress and the final results are expected to be available in the spring of 2021. Conclusions: This study will investigate whether it is feasible to conduct a full-scale RCT to evaluate the clinical effectiveness of the iCST app in comparison to that of usual care alone. In addition, this study will examine the usability of the iCST app. The data will provide information on potential modifications to be made to the intervention, study design, and study process. Trial Registration: ClinicalTrials.gov NCT03282877; https://clinicaltrials.gov/ct2/show/NCT03282877 International Registered Report Identifier (IRRID): DERR1-10.2196/24628 ",
doi="10.2196/24628",
url="https://www.researchprotocols.org/2021/4/e24628",
url="http://www.ncbi.nlm.nih.gov/pubmed/33830058"
}


@Article{info:doi/10.2196/21466,
author="Biliunaite, Ieva
and Kazlauskas, Evaldas
and Sanderman, Robbert
and Truskauskaite-Kuneviciene, Inga
and Dumarkaite, Austeja
and Andersson, Gerhard",
title="Internet-Based Cognitive Behavioral Therapy for Informal Caregivers: Randomized Controlled Pilot Trial",
journal="J Med Internet Res",
year="2021",
month="Apr",
day="7",
volume="23",
number="4",
pages="e21466",
keywords="caregiver burden",
keywords="informal caregivers",
keywords="internet intervention",
keywords="cognitive behavioral therapy",
keywords="eHealth",
keywords="mHealth",
abstract="Background: Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services. Objective: In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers. Methods: In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life. Results: Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=--0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention's platform and the choice of content. Conclusions: This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life. Trial Registration: ClinicalTrials.gov NCT04052724; https://clinicaltrials.gov/ct2/show/NCT04052724 ",
doi="10.2196/21466",
url="https://www.jmir.org/2021/4/e21466",
url="http://www.ncbi.nlm.nih.gov/pubmed/33825687"
}


@Article{info:doi/10.2196/20196,
author="Aung, Nyein Myo
and Moolphate, Saiyud
and Yuasa, Motoyuki
and Aung, Nyein Thin Nyein
and Koyanagi, Yuka
and Supakankunti, Siripen
and Ahmad, Ishtiaq
and Kayano, Ryoma
and Ong, Paul",
title="Community-Integrated Intermediary Care (CIIC) Service Model to Enhance Family-Based, Long-Term Care for Older People: Protocol for a Cluster Randomized Controlled Trial in Thailand",
journal="JMIR Res Protoc",
year="2021",
month="Mar",
day="24",
volume="10",
number="3",
pages="e20196",
keywords="aging",
keywords="Asia",
keywords="care prevention",
keywords="health promotion",
keywords="long-term care",
keywords="implementation research",
abstract="Background: Thailand is one of the most rapidly aging countries in Asia. Traditional family-based care, which has been the basis of most care for older people, is becoming unsustainable as families become smaller. In addition, women tend to be adversely affected as they still form the bulk of caregivers for older people, and many are likely to exit the labor market in order to provide care. Many family caregivers also have no or minimal training, and they may be called upon to provide quite complex care, increasing the proportion of older people receiving suboptimal care if they rely only on informal care that is provided by families and friends. Facing the increasing burden of noncommunicable diseases and age-related morbidity, Thai communities are increasingly in need of community-integrated care models for older persons that can link existing health systems and reduce the burden upon caring families. This need is common to many countries in the Association of Southeast Asian Nations (ASEAN). Objective: In this study, we aimed to assess the effectiveness of a community-integrated intermediary care (CIIC) model to enhance family-based care for older people. Methods: This paper describes a cluster randomized controlled trial comprised of 6 intervention clusters and 6 control clusters that aim to recruit 2000 participants in each arm. This research protocol has been approved by the World Health Organization Ethics Review Committee. The intervention clusters will receive an integrated model of care structured around (1) a community respite service, (2) the strengthening of family care capacity, and (3) an exercise program that aims to prevent entry into long-term care for older people. Control group clusters receive usual care (ie, the current system of long-term care common to all provinces in Thailand), consisting principally of a volunteer-assisted home care service. The trial will be conducted over a period of 2 years. The primary outcome is family caregiver burden measured at a 6-month follow-up, as measured by the Caregiver Burden Inventory. Secondary outcomes consist of biopsychosocial indicators including functional ability, as measured using an activity of daily living scale; depression, as measured by the Geriatric Depression Scale; and quality of life of older people, as measured by the EuroQol 5-dimensions 5-levels scale. Intention-to-treat analysis will be followed. Results: The CIIC facility has been established. Community care prevention programs have been launched at the intervention clusters. Family caregivers are receiving training and assistance. However, the COVID-19 pandemic delayed the intervention. Conclusions: Since ASEAN and many Asian countries share similar traditional family-based, long-term care systems, the proposed CIIC model and the protocol for its implementation and evaluation may benefit other countries wishing to adopt similar community-integrated care models for older people at risk of needing long-term care. Trial Registration: Thai Clinical Trials Registry TCTR20190412004; http://www.thaiclinicaltrials.org/\# International Registered Report Identifier (IRRID): DERR1-10.2196/20196 ",
doi="10.2196/20196",
url="https://www.researchprotocols.org/2021/3/e20196",
url="http://www.ncbi.nlm.nih.gov/pubmed/33759787"
}


@Article{info:doi/10.2196/24755,
author="Ghahramani, Fereshteh
and Wang, Jingguo",
title="Intention to Adopt mHealth Apps Among Informal Caregivers: Cross-Sectional Study",
journal="JMIR Mhealth Uhealth",
year="2021",
month="Mar",
day="17",
volume="9",
number="3",
pages="e24755",
keywords="mobile health",
keywords="cross-sectional study",
keywords="informal caregivers",
keywords="mobile app",
keywords="caregiving app",
keywords="mobile phone",
abstract="Background: Caregiving responsibility can change caregivers' lives; modify their emotions; and make them feel frustrated, fearful, and nervous, thereby imposing physical and mental stress. Caregiving-related mobile apps provide a platform for obtaining valuable and trusted information, connecting more easily with other caregivers, monitoring medications, and managing appointments, and assessing health requirements and conditions of care receivers. Such apps also incorporate valuable resources that address care for the caregivers. Despite the potential benefits of caregiving-related apps, only a limited number of caregivers have adopted and used them. Objective: The aim of this study is to explore the important factors that affect caregivers' intentions to integrate related mobile apps into their routine caregiving responsibilities. Methods: Using the protection motivation theory, we conducted a cross-sectional study among 249 participants. Purposive sampling was used to target participants who met 4 inclusion criteria: US residents, owning and using a smartphone, informal caregivers (individuals who give care to a friend or family member without payment) who provided at least 8 hours of care per week in the past year, and those currently not using any mobile app for caregiving purposes. We created a survey using Qualtrics and posted it on Amazon's Mechanical Turk website. Participants received monetary compensation after successful completion of the survey. Results: We found that capabilities and skills of caregivers to use mobile apps, the app's effectiveness in responding to the needs of caregivers, the degree of control of caregivers over their responsibilities, and the decisions they make for their care receivers can predict their willingness to adopt caregiving-related apps. In addition, the severity of health status and vulnerability of care receivers to unexpected health changes indirectly shape their caregivers' decisions to adopt and use mobile apps for caregiving purposes. Conclusions: This study explores the important factors that affect informal caregivers' intentions to adopt related mobile apps into their routine caregiving responsibilities. The results contribute to both mobile health adoption and the caregiving literature, and they offer significant implications for developers, health care practitioners, and policy makers. ",
doi="10.2196/24755",
url="https://mhealth.jmir.org/2021/3/e24755",
url="http://www.ncbi.nlm.nih.gov/pubmed/33729166"
}


@Article{info:doi/10.2196/19633,
author="Dongmo Kenfack, Esther
and Tendongfor, Nicholas
and Nsagha, Shey Dickson",
title="Home-Based Intervention for the Prevention and Treatment of Malaria Among Children Younger Than 5 Years in the West Region of Cameroon: Protocol for a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2021",
month="Mar",
day="12",
volume="10",
number="3",
pages="e19633",
keywords="home-based management",
keywords="malaria",
keywords="children younger than 5 years",
keywords="home caregivers",
keywords="West Region",
keywords="Cameroon",
abstract="Background: Although malaria is preventable and curable, 1 child dies of this disease every 2 minutes in Africa. Home-based management of malaria reduces the progression of severe malaria by more than 50\%. Scalable, efficacious, and cost-effective strategies are needed to empower the capacities of home caregivers of children younger than 5 years of age in health education, diagnosis, and treatment of malaria at home. Objective: The main objective of this trial is to assess the impact of the management provided by home caregivers on the prevention, diagnosis, and treatment of malaria in children younger than 5 years as compared to the home-based malaria management component of the integrated community-directed intervention (CDI) strategy of community health workers (CHWs). Methods: A randomized controlled trial will be conducted. CHWs have conducted a census of all households where there is at least one child younger than 5 years with their home caregivers. These children and their home caregivers have been randomly placed into the intervention or control groups among the households identified. The trial will allow malaria home-based prevention, diagnosis, and treatment of 350 children younger than 5 years old by home caregivers in the Fombap area (intervention group) where the integrated CDI strategy will not implemented. This group will be compared to the home-based malaria management component of the integrated CDI strategy in which 350 children in the same age group will be followed up by CHWs in the Baneghang area (control group). The primary outcomes will be the prevention, diagnosis, and treatment of malaria in children younger than 5 years of age by home caregivers at home. The secondary outcomes comprise the malaria follow-up indicators produced by home caregivers in the intervention group and those produced by CHWs in the control group. Both descriptive and one-way analysis of variance estimation techniques will be used to compare the mean difference in the 2 strategies. Results: From September 2019 to October 2019, all home caregivers with children younger than 5 years of age were identified in the intervention and control group by CHWs. Following this, 203 home caregivers with their 350 children younger than 5 years were randomly selected and enrolled in the intervention group, while 225 home caregivers with their 350 children younger than 5 years were enrolled in the control group. In the intervention group, 203 home caregivers were trained in November 2019. This home treatment effectively started in December 2019 and will continue until May 2020. Conclusions: Findings from this randomized controlled trial will contribute to resolving the challenges of severe malaria and to limiting the death due to malaria of children younger than 5 years. This will bring benefits to home caregivers who will know how to promptly diagnose and properly treat malaria in their children at home. Trial Registration: Pan African Clinical Trial Registry (PACTR) 202003487018009; https://pactr.samrc.ac.za/TrialDisplay.aspx?TrialID=9788 International Registered Report Identifier (IRRID): DERR1-10.2196/19633 ",
doi="10.2196/19633",
url="https://www.researchprotocols.org/2021/3/e19633",
url="http://www.ncbi.nlm.nih.gov/pubmed/33709938"
}


@Article{info:doi/10.2196/26509,
author="Gupta, Vibhuti
and Raj, Minakshi
and Hoodin, Flora
and Yahng, Lilian
and Braun, Thomas
and Choi, Won Sung",
title="Electronic Health Record Portal Use by Family Caregivers of Patients Undergoing Hematopoietic Cell Transplantation: United States National Survey Study",
journal="JMIR Cancer",
year="2021",
month="Mar",
day="9",
volume="7",
number="1",
pages="e26509",
keywords="hematopoietic stem cell transplantation",
keywords="caregiver",
keywords="mobile apps",
keywords="questionnaire",
keywords="survey",
keywords="app",
keywords="cancer",
keywords="electronic health record",
keywords="EHR",
keywords="online portal",
keywords="transplant",
keywords="stem cell",
keywords="management",
abstract="Background: As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs. Objective: This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient's health, as well as potential factors associated with portal use. Methods: An electronic caregiver health survey, first developed via cognitive interviewing methods of hematopoietic cell transplantation caregivers, was distributed nationally (in the United States) by patient advocacy organizations to family caregivers of hematopoietic cell transplantation patients. It was used to assess self-reported caregiver demographics, caregiving characteristics, depression and anxiety with the Patient Health Questionnaire--4, coping with the Brief COPE, and caregiver portal use to manage care recipient's and their own health. Results: We found that 77\% of respondents (720/937) accessed electronic health record patient portals for their care recipients, themselves, or both. Multivariate models indicated use of care recipient electronic health record portals by caregivers was more likely with young, White, married, low-income caregivers caring for a parent, residing with the care recipient, and experiencing more caregiver depression. Caregiver use of their own electronic health record portal was more likely with young, White, high-income caregivers caring for a parent and experiencing chronic medical conditions of their own. Partially due to multicollinearity, anxiety and coping did not contribute independently to this model. Conclusions: Findings from the survey could open avenues for future research into caregiver use of technology for informational support or intervention, including wearables and mobile health. International Registered Report Identifier (IRRID): RR2-10.2196/4918 ",
doi="10.2196/26509",
url="https://cancer.jmir.org/2021/1/e26509",
url="http://www.ncbi.nlm.nih.gov/pubmed/33687332"
}


@Article{info:doi/10.2196/25123,
author="Naqvi, Ali Imama
and Montiel, Casameni Tahani
and Bittar, Yazan
and Hunter, Norma
and Okpala, Munachi
and Johnson, Constance
and Weiner, G. Mark
and Savitz, Sean
and Sharrief, Anjail
and Beauchamp, Sanner Jennifer Elizabeth",
title="Internet Access and Usage Among Stroke Survivors and Their Informal Caregivers: Cross-sectional Study",
journal="JMIR Form Res",
year="2021",
month="Mar",
day="8",
volume="5",
number="3",
pages="e25123",
keywords="internet access",
keywords="stroke",
keywords="caregivers",
keywords="surveys",
keywords="questionnaires",
keywords="mobile phone",
abstract="Background: Web-based interventions have shown promise for chronic disease management but have not been widely applied to populations with stroke. Existing barriers may inhibit the adoption of web-based interventions among stroke survivors and necessitate the involvement of informal caregivers. However, limited information is available on internet accessibility and usability among stroke survivors and their caregivers. Objective: This study aims to investigate internet access and usage in a cohort of stroke survivors and their caregivers. Methods: A cross-sectional survey was conducted with 375 participants (248 stroke survivors and 127 caregivers). Descriptive statistics were generated using cross-tabulation. Comparisons with categorical data were conducted using the chi-square test, whereas the Mann-Whitney U test was used for comparisons involving ordinal variables. Results: Overall, 86.1\% (323/375) of the participants reported having internet access. Caregivers were more likely than stroke survivors to access the internet (N=375, $\chi$21=18.5, P<.001) and used text messaging (n=321, $\chi$21=14.7, P<.001). Stroke survivors and caregivers with internet access were younger than stroke survivors and caregivers without internet access. The highest number of participants who reported internet access were non-Hispanic White. Smartphones were the most common devices used to access the internet. Email was the most common type of internet usage reported. Patients who survived for >12 months after a stroke reported higher internet access than those who survived <3 months (P<.001). The number of hours per week spent using the internet was higher for caregivers than for stroke survivors (P<.001). Conclusions: Future feasibility and acceptability studies should consider the role of the informal caregiver, participant age, race and ethnicity, the use of smartphone apps, email and text correspondence, and the amount of time elapsed since the stroke event in the design and implementation of web-based interventions for populations with stroke. ",
doi="10.2196/25123",
url="https://formative.jmir.org/2021/3/e25123",
url="http://www.ncbi.nlm.nih.gov/pubmed/33683206"
}


@Article{info:doi/10.2196/25805,
author="Broome, Brantlee
and Madisetti, Mohan
and Prentice, Margaret
and Williams, Wong Kelli
and Kelechi, Teresa",
title="Food Allergy Symptom Self-Management With Technology (FASST) mHealth Intervention to Address Psychosocial Outcomes in Caregivers of Children With Newly Diagnosed Food Allergy: Protocol for a Pilot Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2021",
month="Mar",
day="3",
volume="10",
number="3",
pages="e25805",
keywords="caregiver well-being",
keywords="food allergy",
keywords="self-management",
keywords="mhealth, randomizes mixed trial",
keywords="caregiver",
keywords="well-being",
keywords="emergency room",
keywords="smartphone app",
keywords="smartphone",
keywords="children",
abstract="Background: Approximately 2.4 million children in the United States suffer from food-induced anaphylaxis, a condition that is annually responsible for over 200 deaths and 200,000 emergency room visits. As a result, caregivers of children newly diagnosed with severe and life-threatening food allergic reactions experience clinically significant symptoms of psychological distress, including fatigue, anxiety, depressed mood, social isolation, and substantially reduced quality of life. Despite this recognition, there is a lack of caregiver-centered self-management interventions to address these concerns. Objective: In this protocol, we propose to develop and conduct feasibility testing of a technology-enhanced, self-management, mobile health, smartphone app intervention called Food Allergy Symptom Self-Management with Technology for Caregivers (FASST) designed to meet the psychosocial health needs of caregivers of children with a new diagnosis of food allergy. Methods: This pilot study uses qualitative work (Phase I) to inform a 4-week longitudinal randomized controlled trial (Phase II). In Phase I, 10 caregivers of children (?18 years old) with established food allergy (?1 year from diagnosis) will participate in semistructured interviews to inform the development of the FASST app. In Phase II, 30 caregivers of children (?18 years old) with a newly diagnosed food allergy (?90 days from diagnosis) will be randomized 2:1 to receive the FASST intervention (n=20) or control condition (basic app with educational resources; n=10). Process measures include feasibility, caregiver acceptability, adherence, and satisfaction. Outcome measures include caregiver fatigue, anxiety, depression, sleep, self-efficacy, and quality of life measured at baseline, week 4, and 3 months post study completion. Results: Phase I study activities have been completed, and Phase II participant enrollment into the randomized controlled trial is expected to commence in 2021. Conclusions: With limited readily available resources at their disposal, the results from this study have the potential to provide caregivers of children with a newly diagnosed food allergy a tool to help them self-manage and mitigate negative psychosocial factors during a critical time period in the caregiving/condition trajectory. Trial Registration: ClinicalTrials.gov Identifier NCT04512924: https://clinicaltrials.gov/ct2/show/NCT04512924 International Registered Report Identifier (IRRID): DERR1-10.2196/25805 ",
doi="10.2196/25805",
url="https://www.researchprotocols.org/2021/3/e25805",
url="http://www.ncbi.nlm.nih.gov/pubmed/33656448"
}


@Article{info:doi/10.2196/14953,
author="Kajiwara, Kohei
and Kako, Jun
and Noto, Hiroko
and Oosono, Yasufumi
and Kobayashi, Masamitsu",
title="The Potential for the Internet and Telehealth in Caregiver Support. Comment on ``Using Technology to Facilitate Fidelity Assessments: The Tele-STAR Caregiver Intervention''",
journal="J Med Internet Res",
year="2021",
month="Feb",
day="16",
volume="23",
number="2",
pages="e14953",
keywords="dementia",
keywords="caregiver",
keywords="technology",
doi="10.2196/14953",
url="https://www.jmir.org/2021/2/e14953",
url="http://www.ncbi.nlm.nih.gov/pubmed/33591281"
}


@Article{info:doi/10.2196/24965,
author="Ramirez, Magaly
and Duran, C. Miriana
and Pabiniak, J. Chester
and Hansen, E. Kelly
and Kelley, Ann
and Ralston, D. James
and McCurry, M. Susan
and Teri, Linda
and Penfold, B. Robert",
title="Family Caregiver Needs and Preferences for Virtual Training to Manage Behavioral and Psychological Symptoms of Dementia: Interview Study",
journal="JMIR Aging",
year="2021",
month="Feb",
day="10",
volume="4",
number="1",
pages="e24965",
keywords="dementia",
keywords="Alzheimer disease",
keywords="behavioral symptoms",
keywords="caregivers",
keywords="internet-based intervention",
keywords="education",
keywords="behavior",
keywords="symptom",
keywords="psychology",
keywords="qualitative",
keywords="caregiver",
keywords="intervention",
keywords="training",
keywords="virtual care",
keywords="digital health",
abstract="Background: Behavioral and psychological symptoms of dementia (BPSD) are associated with increased stress, burden, and depression among family caregivers of people with dementia. STAR-Caregivers Virtual Training and Follow-up (STAR-VTF) is adapted from an evidence-based, in-person program that trains family caregivers to manage BPSD. We used a human-centered design approach to obtain feedback from family caregivers about STAR-VTF. The program will be evaluated using a pragmatic randomized trial. Objective: The objective of the study was to understand the needs of family caregivers for improving BPSD management and the extent to which caregivers perceived that STAR-VTF could address those needs. Methods: Between July and September 2019, we conducted 15 semistructured interviews with family caregivers of people with dementia who receive care at Kaiser Permanente Washington in the Seattle metropolitan area. We identified participants from electronic health records, primarily based on a prescription for antipsychotic medication for the person with dementia (a proxy for caregivers dealing with BPSD). We showed caregivers low-fidelity prototypes of STAR-VTF online self-directed materials and verbally described potential design elements. We obtained caregiver feedback on these elements, focusing on their needs and preferences and perceived barriers to using STAR-VTF. We used a hybrid approach of inductive and deductive coding and aggregated codes to develop themes. Results: The idea of a virtual training program for learning to manage BPSD appealed to caregivers. They said health care providers did not provide adequate education in the early disease stages about the personality and behavior symptoms that can affect people with dementia. Caregivers found it unexpected and frustrating when the person with dementia began experiencing BPSD, symptoms they felt unprepared to manage. Accordingly, caregivers expressed a strong desire for the health care organization to offer programs such as STAR-VTF much sooner. Caregivers had already put considerable effort into problem solving challenging behaviors. They anticipated deriving less value from STAR-VTF at that point. Nonetheless, many were interested in the virtual aspect of the training due to the convenience of receiving help from home and the perception that help from a virtual program would be timelier than traditional service modalities (eg, face to face). Given caregivers' limited time, they suggested dividing the STAR-VTF content into chunks to review as time permitted. Caregivers were interested in having a STAR-VTF provider for additional support in managing challenging behaviors. Caregivers reported a preference for having the same coach for the program duration. Conclusions: Caregivers we interviewed would likely accept a virtual training program such as STAR-VTF to obtain information about BPSD and receive help managing it. Family caregivers anticipated deriving more value if STAR-VTF was offered earlier in the disease course. ",
doi="10.2196/24965",
url="http://aging.jmir.org/2021/1/e24965/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33565984"
}


@Article{info:doi/10.2196/21629,
author="Christie, Liane Hannah
and Boots, Maria Lizzy Mitzy
and Tange, Johannes Huibert
and Verhey, Josef Frans Rochus
and de Vugt, Elizabeth Marjolein",
title="Implementations of Evidence-Based eHealth Interventions for Caregivers of People With Dementia in Municipality Contexts (Myinlife and Partner in Balance): Evaluation Study",
journal="JMIR Aging",
year="2021",
month="Feb",
day="5",
volume="4",
number="1",
pages="e21629",
keywords="eHealth",
keywords="mHealth",
keywords="implementation science",
keywords="dementia",
keywords="caregiving",
keywords="municipality",
abstract="Background: Very few evidence-based eHealth interventions for caregivers of people with dementia are implemented into practice. Municipalities are one promising context in which to implement these interventions due to their available policy and innovation incentives regarding (dementia) caregiving and prevention. In this study, two evidence-based eHealth interventions for caregivers of people with dementia (Partner in Balance and Myinlife) were implemented in 8 municipalities in the Euregion Meuse-Rhine. Partner in Balance is a blended care, 8-week, self-management intervention intervention designed to aid caregivers of people with dementia in adapting to their new roles that is delivered through coaches in participating health care organizations who are trained to use it to offer online support to their clients. Myinlife is an eHealth/mHealth intervention integrated into the Dutch Alzheimer's Association website and available from the App Store or Google Play, designed to help caregivers of people with dementia use their social network to better organize care and share positive (caregiving) experiences. Objective: This study's objectives were to evaluate the success of the implementation of Myinlife and Partner in Balance and investigate determinants of their successful implementation in the municipality context. Methods: This study collected eHealth use data, Partner in Balance coach evaluation questionnaires, and information on implementation determinants. This was done by conducting interviews with the municipality officials based on the measurement instrument for determinants of implementation (MIDI). These data from multiple sources and perspectives were integrated and analyzed to form a total picture of the determinants (barriers and facilitators to implementation in the municipality context). Results: The municipality implementation of Partner in Balance and Myinlife showed varying levels of success. In the end, 3 municipalities planned to continue the implementation of  Partner in Balance, while none planned to continue the implementation of Myinlife. The 2 Partner in Balance municipalities that did not consider the implementation to be successful viewed the implementation as an external project. For Myinlife, it was clear that more face-to-face contact was needed to engage the implementing municipality and target groups. Successful implementations were linked to implementer self-efficacy and sense of ownership, which seemed to be absent in unsuccessful implementations. Conclusions: The experiences of implementing these interventions suggested that this implementation context was feasible regarding the required budget and infrastructure. The need to foster sense of ownership and self-efficacy in implementers will be integrated into future implementation protocols as part of standard implementation materials for municipalities and organizations implementing Myinlife and Partner in Balance. ",
doi="10.2196/21629",
url="http://aging.jmir.org/2021/1/e21629/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33544085"
}


@Article{info:doi/10.2196/23381,
author="Vollmer Dahlke, Deborah
and Lee, Shinduk
and Smith, Lee Matthew
and Shubert, Tiffany
and Popovich, Stephen
and Ory, G. Marcia",
title="Attitudes Toward Technology and Use of Fall Alert Wearables in Caregiving: Survey Study",
journal="JMIR Aging",
year="2021",
month="Jan",
day="27",
volume="4",
number="1",
pages="e23381",
keywords="wearables",
keywords="falls alert technology",
keywords="falls",
keywords="caregivers",
keywords="care recipients",
abstract="Background: Wearable technology for fall alerts among older adult care recipients is one of the more frequently studied areas of technology, given the concerning consequences of falls among this population. Falls are quite prevalent in later life. While there is a growing amount of literature on older adults' acceptance of technology, less is known about how caregivers' attitudes toward technology can impact care recipients' use of such technology. Objective: The objective of our study was to examine associations between caregivers' attitudes toward technology for caregiving and care recipients' use of fall alert wearables. Methods: This study examined data collected with an online survey from 626 caregivers for adults 50 years and older. Adapted from the technology acceptance model, a structural equation model tested the following prespecified hypotheses: (1) higher perceived usefulness of technologies for caregiving would predict higher perceived value of and greater interest in technologies for caregiving; (2) higher perceived value of technologies for caregiving would predict greater interest in technologies for caregiving; and (3) greater interest in technologies for caregiving would predict greater use of fall alert wearables among care recipients. Additionally, we included demographic factors (eg, caregivers' and care recipients' ages) and caregiving context (eg, caregiver type and caregiving situation) as important predictors of care recipients' use of fall alert wearables. Results: Of 626 total respondents, 548 (87.5\%) with all valid responses were included in this study. Among care recipients, 28\% used fall alert wearables. The final model had a good to fair model fit: a confirmatory factor index of 0.93, a standardized root mean square residual of 0.049, and root mean square error of approximation of 0.066. Caregivers' perceived usefulness of technology was positively associated with their attitudes toward using technology in caregiving (b=.70, P<.001) and interest in using technology for caregiving (b=.22, P=.003). Greater perceived value of using technology in caregiving predicted greater interest in using technology for caregiving (b=.65, P<.001). Greater interest in using technology for caregiving was associated with greater likelihood of care recipients using fall alert wearables (b=.27, P<.001). The caregiver type had the strongest inverse relationship with care recipients' use of fall alert wearables (unpaid vs paid caregiver) (b=--.33, P<.001). Conclusions: This study underscores the importance of caregivers' attitudes in care recipients' technology use for falls management. Raising awareness and improving perception about technologies for caregiving may help caregivers and care recipients adopt and better utilize technologies that can promote independence and enhance safety. ",
doi="10.2196/23381",
url="http://aging.jmir.org/2021/1/e23381/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33502320"
}


@Article{info:doi/10.2196/21708,
author="Ferr{\'e}-Grau, Carme
and Raigal-Aran, Laia
and Lorca-Cabrera, Jael
and Lluch-Canut, Teresa
and Ferr{\'e}-Bergad{\`a}, Maria
and Lleix{\'a}-Fortu{\~n}o, Mar
and Puig-Llobet, Montserrat
and Miguel-Ruiz, Dolores Maria
and Albacar-Riob{\'o}o, N{\'u}ria",
title="A Mobile App--Based Intervention Program for Nonprofessional Caregivers to Promote Positive Mental Health: Randomized Controlled Trial",
journal="JMIR Mhealth Uhealth",
year="2021",
month="Jan",
day="22",
volume="9",
number="1",
pages="e21708",
keywords="clinical trial",
keywords="caregiver",
keywords="mobile phone app",
keywords="intervention program",
keywords="positive mental health",
keywords="mobile health",
keywords="health promotion",
keywords="randomized controlled trial",
keywords="nursing",
keywords="caregiving",
keywords="technology",
abstract="Background: While nonprofessional caregivers often experience a sense of fulfillment when they provide care, there is also a significant risk of emotional and physical burnout. Consequently, this can negatively affect both the caregiver and the person being cared for. Intervention programs can help empower nonprofessional caregivers of people with chronic diseases and develop solutions to decrease the physical and psychological consequences resulting from caregiving. However, most clinically tested intervention programs for nonprofessional caregivers require face-to-face training, and many caregivers encounter obstacles that hinder their participation in such programs. Consequently, it is necessary to design internet-based intervention programs for nonprofessional caregivers that address their needs and test the efficacy of the programs. Objective: The aim of this study was to evaluate the effectiveness of a smartphone app--based intervention program to increase positive mental health for nonprofessional caregivers. Methods: This study was a randomized controlled trial of 3 months' duration. A total of 152 caregivers over 18 years of age with a minimum of 4 months' experience as nonprofessional caregivers were recruited from primary health care institutions. Nonprofessional caregivers were randomized into two groups. In the intervention group, each caregiver installed a smartphone app and used it for 28 days. This app offered them daily activities that were based on 10 recommendations to promote positive mental health. The level of positive mental health, measured using the Positive Mental Health Questionnaire (PMHQ), and caregiver burden, measured using the 7-item short-form version of the Zarit Caregiver Burden Interview (ZBI-7), were the primary outcomes. Users' satisfaction was also measured. Results: In all, 113 caregivers completed the study. After the first month of the intervention, only one factor of the PMHQ, F1--Personal satisfaction, showed a significant difference between the groups, but it was not clinically relevant (0.96; P=.03). However, the intervention group obtained a higher mean change for the overall PMHQ score (mean change between groups: 1.40; P=.24). The results after the third month of the intervention showed an increment of PMHQ scores. The mean difference of change in the PMHQ score showed a significant difference between the groups (11.43; P<.001; d=0.82). Significant changes were reported in 5 of the 6 factors, especially F5--Problem solving and self-actualization (5.69; P<.001; d=0.71), F2--Prosocial attitude (2.47; P<.001; d=1.18), and F3--Self-control (0.76; P=.03; d=0.50). The results of the ZBI-7 showed a decrease in caregiver burden in the intervention group, although the results were inconclusive. Approximately 93.9\% (46/49) of the app users indicated that they would recommend the app to other caregivers and 56.3\% (27/49) agreed that an extension of the program's duration would be beneficial. Conclusions: The app-based intervention program analyzed in this study was effective in promoting positive mental health and decreasing the burden of caregivers and achieved a high range of user satisfaction. This study provides evidence that mobile phone app--based intervention programs may be useful tools for increasing nonprofessional caregivers' well-being. The assessment of the effectiveness of intervention programs through clinical trials should be a focus to promote internet-based programs in health policies. Trial Registration: ISRCTN Registry ISRCTN14818443; http://www.isrctn.com/ISRCTN14818443 International Registered Report Identifier (IRRID): RR2-10.1186/s12889-019-7264-5 ",
doi="10.2196/21708",
url="http://mhealth.jmir.org/2021/1/e21708/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33480852"
}


@Article{info:doi/10.2196/23904,
author="Levinson, J. Anthony
and Bousfield, John
and Douglas, William
and Ayers, Stephanie
and Sztramko, Richard",
title="A Novel Educational Prescription Web-Based Application to Support Education for Caregivers of People Living With Dementia: Development and Usability Study With Clinicians",
journal="JMIR Hum Factors",
year="2020",
month="Dec",
day="4",
volume="7",
number="4",
pages="e23904",
keywords="dementia",
keywords="caregiver",
keywords="education prescription",
keywords="online education",
keywords="internet",
keywords="eHealth",
keywords="knowledge translation",
keywords="implementation science",
keywords="scale and spread",
abstract="Background: It is estimated that 564,000 Canadians are currently living with dementia and there are approximately 486,000 to 1.1 million informal family/friend caregivers. Family/friend caregivers often receive little to no education or training about dementia but are expected to provide ongoing support for a complex condition. Web-based family/friend caregiver interventions may be helpful, but little is known about how best to implement them. Objective: The objectives of this study were to 1) design and develop a novel education prescription application to help scale and spread web-based dementia education to family/friend caregivers, 2) conduct user testing, and 3) conduct a larger-scale field trial. Methods: A novel education prescription web-based application was designed and developed. Initial user testing used task completion and the ``think aloud'' technique with a small sample of representative clinicians who work with people living with dementia and family/friend caregivers. Following iterative incorporation of feedback, a larger field trial was conducted with a convenience sample of clinicians. Account invitations were sent to 55 clinicians and, following a 2-month trial period, surveys were administered to participants including the System Usability Scale and the Net Promoter Score. Results: During the initial user testing phase, participants (N=7) from representative disciplines easily completed associated tasks, and had very positive feedback with respect to the usability of the application. The System Usability Scale score during this phase was 91.4. Suggestions from feedback were incorporated into the application. During the larger field trial phase, participants (total N=55; activated account n=17; did not activate account n=38) were given access to the iGeriCare education prescription application. During this period, 2 participants created educational prescriptions; a total of 3 educational prescriptions were sent. Survey completers who did not activate their account (n=5) identified that their lack of use was due to time constraints, competing priorities, or forgetting to use the application. Survey completers who activated their account (n=5) identified their lower use was due to lack of time, lack of eligible family/friend caregivers during trial period, and competing priorities due to the COVID-19 pandemic. The System Usability Scale  score during this phase was 78.75, and the Net Promoter Score was 50. Conclusions: Study findings indicate a generally positive response for the usability of a web-based application for clinicians to prescribe dementia education to family/friend caregivers. The dissonance between the promising data and widespread enthusiasm for the design and purpose of the education prescription application found in the initial user testing phase and subsequent lack of significant adoption in the field trial represents both an important lesson for other novel health technologies and a potential area for further investigation. Further research is required to better understand factors associated with implementation of this type of intervention and impact on dissemination of education to family/friend caregivers. ",
doi="10.2196/23904",
url="http://humanfactors.jmir.org/2020/4/e23904/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33275103"
}


@Article{info:doi/10.2196/20325,
author="Liu, Mandong
and Jiang, Tongge
and Yu, Kexin
and Wu, Shinyi
and Jordan-Marsh, Maryalice
and Chi, Iris",
title="Care Me Too, a Mobile App for Engaging Chinese Immigrant Caregivers in Self-Care: Qualitative Usability Study",
journal="JMIR Form Res",
year="2020",
month="Dec",
day="2",
volume="4",
number="12",
pages="e20325",
keywords="mHealth",
keywords="co-design",
keywords="usability",
keywords="acceptability",
keywords="immigrant",
keywords="caregiver",
keywords="mobile phone",
abstract="Background: Caregiving and self-care are challenging for Chinese immigrants in the United States due to limited accessible support and resources. Few interventions exist to assist Chinese immigrant caregivers in better performing self-care. To address this gap in the literature, our team developed the Care Me Too app to engage Chinese immigrant caregivers in self-care and conducted a user experience test to assess its usability and acceptability. Objective: This paper aims to report the results of the app's usability and acceptability testing with Chinese immigrant caregivers and to solicit participants' feedback of the app design and functions. Methods: A total of 22 Mandarin-speaking Chinese caregivers participated in the study, which consisted of 2 parts: the in-lab testing and the 1-week at-home testing. In-depth face-to-face interviews and follow-up phone interviews were used to assess user experience of the app's usability and acceptability and to solicit feedback for app design and functions. Directed content analysis was used to analyze the qualitative data. Results: Among the 22 participants, the average age was 60.5 (SD 8.1) years, ranging from 46 to 80 years; 17 (77\%) participants were women and 14 (64\%) had an associate degree or higher. Participants reported uniformly positive ratings of the usability and acceptability of the app and provided detailed suggestions for app improvement. We generated guidelines for mobile health (mHealth) app designs targeting immigrant caregivers, including weighing flexibility versus majority preferences, increasing text sizes, using colors effectively, providing engaging and playful visual designs and functions, simplifying navigation, simplifying the log-in process, improving access to and the content on the help document, designing functions to cater to the population's context, and ensuring offline access. Conclusions: The main contribution of this study is the improved understanding of Chinese caregivers' user experiences with a language-appropriate mHealth app for a population that lacks accessible caregiving and self-care resources and support. It is recommended that future researchers and app designers consider the proposed guidelines when developing mHealth apps for their population to enhance user experience and harness mHealth's value. ",
doi="10.2196/20325",
url="https://formative.jmir.org/2020/12/e20325",
url="http://www.ncbi.nlm.nih.gov/pubmed/33263552"
}


@Article{info:doi/10.2196/20304,
author="Willard, Sarah
and van Rossum, Erik
and Spreeuwenberg, Marieke
and de Witte, Luc",
title="Perceived Impact of an Online Community Care Platform for Dutch Older Adults on Local Participation, Informal Caregiving, and Feelings of Connectedness: Pretest-Posttest Observational Study",
journal="J Med Internet Res",
year="2020",
month="Dec",
day="1",
volume="22",
number="12",
pages="e20304",
keywords="older adults",
keywords="online community",
keywords="online platform",
keywords="social network",
keywords="local participation",
keywords="informal caregiving",
abstract="Background: In a changing ageing society wherein older adults are increasingly expected to take care of themselves instead of relying on health care services, online community care platforms can help older adults to meet these expectations. A considerable number of these online community care platforms have been introduced in several European countries based on their potential. However, their actual impact is unclear. Objective: The aim of this study was to investigate the self-reported use, expectations, and perceived impact of a Dutch online community care platform called Grubbenvorst-Online among Dutch older adults. The following 2 questions were studied: (1) What is the self-reported use of Grubbenvorst-Online among older adults? (2) What are their expectations and perceived impact of Grubbenvorst-Online regarding local participation, their social network, mutual informal caregiving, and feelings of connectedness? Methods: An observational pretest-posttest study was conducted. Participants were recruited via a web-based message on the Grubbenvorst-Online platform and data were collected via postal questionnaires among older users at the start of the study and 4 months later. Data regarding the expectations and the perceived impact of Grubbenvorst-Online were compared and tested. Results: Forty-seven Grubbenvorst-Online users with an average age of 74 years participated in this study. They were healthy, predominantly ``internet-skilled,'' and they found the internet important for maintaining social contacts. In general, the use of the online community care platform decreased during the 4-month follow-up period. The perceived impact of Grubbenvorst-Online was significantly lower than that expected regarding information provision (P=.003), seeking help from fellow villagers (P<.001), giving help to fellow villagers (P<.001), and consulting care or welfare services (P<.001). Conclusions: The findings of this study indicate that online community care platforms perhaps do not provide enough ``added value'' in their current form. We suggest a new direction in which online community care platforms primarily support existing offline initiatives aimed at stimulating local participation, informal caregiving, and feelings of connectedness. ",
doi="10.2196/20304",
url="https://www.jmir.org/2020/12/e20304",
url="http://www.ncbi.nlm.nih.gov/pubmed/33258779"
}


@Article{info:doi/10.2196/21799,
author="LeLaurin, H. Jennifer
and Lamba, H. Avi
and Eliazar-Macke, D. Nathaniel
and Schmitzberger, K. Magda
and Freytes, Magaly I.
and Dang, Stuti
and Vogel, Bruce W.
and Levy, E. Charles
and Klanchar, Angelina S.
and Beyth, J. Rebecca
and Shorr, I. Ronald
and Uphold, R. Constance",
title="Postdischarge Intervention for Stroke Caregivers: Protocol for a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2020",
month="Nov",
day="11",
volume="9",
number="11",
pages="e21799",
keywords="COVID-19",
keywords="stroke",
keywords="caregivers",
keywords="depression",
keywords="burden",
keywords="randomized controlled trial",
keywords="web-based intervention",
keywords="problem-solving",
abstract="Background: The majority of stroke survivors return to their homes and need assistance from family caregivers to perform activities of daily living. These increased demands coupled with the lack of preparedness for their new roles lead to a high risk for caregivers developing depressive symptoms and other negative outcomes. Follow-up home support and problem-solving interventions with caregivers are crucial for maintaining stroke survivors in their homes. Problem-solving interventions are effective but are underused in practice because they require large amounts of staff time to implement and are difficult for caregivers logistically. Objective: The aim of this study is to test a problem-solving intervention for stroke caregivers that can be delivered over the telephone during the patient's transitional care period (time when the stroke survivor is discharged to home) followed by 8 asynchronous online sessions. Methods: The design is a two-arm parallel randomized clinical trial with repeated measures. We will enroll 240 caregivers from eight Veterans Affairs (VA) medical centers. Participants randomized into the intervention arm receive a modified problem-solving intervention that uses telephone and web-based support and training with interactive modules, fact sheets, and tools on the previously developed and nationally available Resources and Education for Stroke Caregivers' Understanding and Empowerment Caregiver website. In the usual care group, no changes are made in the information, discharge planning, or care the patients who have had a stroke normally receive, and caregivers have access to existing VA resources (eg, caregiver support line, self-help materials). The primary outcome is a change in caregiver depressive symptoms at 11 and 19 weeks after baseline data collection. Secondary outcomes include changes in stroke caregivers' burden, knowledge, positive aspects of caregiving, self-efficacy, perceived stress, health-related quality of life, and satisfaction with care and changes in stroke survivors' functional abilities and health care use. The team will also determine the budgetary impact, facilitators, barriers, and best practices for implementing the intervention. Throughout all phases of the study, we will collaborate with members of an advisory panel. Results: Study enrollment began in June 2015 and is ongoing. The first results are expected to be submitted for publication in 2021. Conclusions: This is the first known study to test a transitional care and messaging center intervention combined with technology to decrease caregiver depressive symptoms and to improve the recovery of stroke survivors. If successful, findings will support an evidence-based model that can be transported into clinical practice to improve the quality of caregiving post stroke. Trial Registration: ClinicalTrials.gov NCT01600131; https://www.clinicaltrials.gov/ct2/show/NCT01600131 International Registered Report Identifier (IRRID): DERR1-10.2196/21799 ",
doi="10.2196/21799",
url="http://www.researchprotocols.org/2020/11/e21799/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33174856"
}


@Article{info:doi/10.2196/18399,
author="Latulippe, Karine
and Hamel, Christine
and Giroux, Dominique",
title="Co-Design to Support the Development of Inclusive eHealth Tools for Caregivers of Functionally Dependent Older Persons: Social Justice Design",
journal="J Med Internet Res",
year="2020",
month="Nov",
day="9",
volume="22",
number="11",
pages="e18399",
keywords="caregivers",
keywords="aged",
keywords="help-seeking behavior",
keywords="community-based participatory research",
keywords="eHealth",
keywords="telemedicine",
keywords="health care disparities",
abstract="Background: eHealth can help reduce social health inequalities (SHIs) as much as it can exacerbate them. Taking a co-design approach to the development of eHealth tools has the potential to ensure that these tools are inclusive. Although the importance of involving future users in the development of eHealth tools to reduce SHIs is highlighted in the scientific literature, the challenges associated with their participation question the benefits of this involvement as co-designers in a real-world context. Objective: On the basis of Amartya Sen's theoretical framework of social justice, the aim of this study is to explore how co-design can support the development of an inclusive eHealth tool for caregivers of functionally dependent older persons. Methods: This study is based on a social justice design and participant observation as part of a large-scale research project funded by the Ministry of Families as part of the Age-Friendly Quebec Program (Qu{\'e}bec Ami des A{\^i}n{\'e}s). The analysis was based on the method developed by Miles and Huberman and on Paill{\'e}'s analytical questioning method. Results: A total of 78 people participated in 11 co-design sessions in 11 Quebec regions. A total of 24 preparatory meetings and 11 debriefing sessions were required to complete this process. Co-designers participated in the creation of a prototype to support the search for formal services for caregivers. The majority of participants (except for 2) significantly contributed to the tool's designing. They also incorporated conversion factors to ensure the inclusiveness of the eHealth tool, such as an adequate level of digital literacy and respect for the caregiver's help-seeking process. In the course of the experiment, the research team's position regarding its role in co-design evolved from a neutral posture and promoting co-designer participation to one that was more pragmatic. Conclusions: The use of co-design involving participants at risk of SHIs does not guarantee innovation, but it does guarantee that the tool developed will comply with their process of help-seeking and their literacy level. Time issues interfere with efforts to carry out a democratic process in its ideal form. It would be useful to single out some key issues to guide researchers on what should be addressed in co-design discussions and what can be left out to make optimal use of this approach in a real-world context. ",
doi="10.2196/18399",
url="http://www.jmir.org/2020/11/e18399/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33164905"
}


@Article{info:doi/10.2196/15885,
author="Wali, Sahr
and Keshavjee, Karim
and Nguyen, Linda
and Mbuagbaw, Lawrence
and Demers, Catherine",
title="Using an Electronic App to Promote Home-Based Self-Care in Older Patients With Heart Failure: Qualitative Study on Patient and Informal Caregiver Challenges",
journal="JMIR Cardio",
year="2020",
month="Nov",
day="9",
volume="4",
number="1",
pages="e15885",
keywords="mobile health",
keywords="mobile apps",
keywords="heart failure",
keywords="self-care",
keywords="mobile phone",
abstract="Background: Heart failure (HF) affects many older individuals in North America, with recurrent hospitalizations despite postdischarge strategies to prevent readmission. Proper HF self-care can potentially lead to better clinical outcomes, yet many older patients find self-care challenging. Mobile health (mHealth) apps can provide support to patients with respect to HF self-care. However, many mHealth apps are not designed to consider potential patient barriers, such as literacy, numeracy, and cognitive impairment, leading to challenges for older patients. We previously demonstrated that a paper-based standardized diuretic decision support tool (SDDST) with daily weights and adjustment of diuretic dose led to improved self-care. Objective: The aim of this study is to better understand the self-care challenges that older patients with HF and their informal care providers (CPs) face on a daily basis, leading to the conversion of the SDDST into a user-centered mHealth app. Methods: We recruited 14 patients (male: 8/14, 57\%) with a confirmed diagnosis of HF, aged ?60 years, and 7 CPs from the HF clinic and the cardiology ward at the Hamilton General Hospital. Patients were categorized into 3 groups based on the self-care heart failure index: patients with adequate self-care, patients with inadequate self-care without a CP, or patients with inadequate self-care with a CP. We conducted semistructured interviews with patients and their CPs using persona-scenarios. Interviews were transcribed verbatim and analyzed for emerging themes using an inductive approach. Results: Six themes were identified: usability of technology, communication, app customization, complexity of self-care, usefulness of HF-related information, and long-term use and cost. Many of the challenges patients and CPs reported involved their unfamiliarity with technology and the lack of incentive for its use. However, participants were supportive and more likely to actively use the HF app when informed of the intervention's inclusion of volunteer and nurse assistance. Conclusions: Patients with varying self-care adequacy levels were willing to use an mHealth app if it was simple in its functionality and user interface. To promote the adoption and usability of these tools, patients confirmed the need for researchers to engage with end users before developing an app. Findings from this study can be used to help inform the design of an mHealth app to ensure that it is adapted for the needs of older individuals with HF. ",
doi="10.2196/15885",
url="http://cardio.jmir.org/2020/1/e15885/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33164901"
}


@Article{info:doi/10.2196/21264,
author="Levinson, J. Anthony
and Ayers, Stephanie
and Butler, Lianna
and Papaioannou, Alexandra
and Marr, Sharon
and Sztramko, Richard",
title="Barriers and Facilitators to Implementing Web-Based Dementia Caregiver Education From the Clinician's Perspective: Qualitative Study",
journal="JMIR Aging",
year="2020",
month="Oct",
day="2",
volume="3",
number="2",
pages="e21264",
keywords="dementia",
keywords="caregiver",
keywords="online education",
keywords="implementation science",
keywords="internet",
keywords="eHealth",
abstract="Background: Internet-based dementia caregiver interventions have been shown to be effective for a range of caregiver outcomes; however, little is known about how to best implement them. We developed iGeriCare, an evidence-based, multimedia, web-based educational resource for family caregivers of people living with dementia. Objective: This study aims to obtain feedback and opinions from experts and clinicians involved in dementia care and caregiver education about 1 iGeriCare and 2 barriers and facilitators to implementing a web-based caregiver program. Methods: We carried out semistructured interviews with individuals who had a role in dementia care and/or caregiver education in several key stakeholder settings in Southern Ontario, Canada. We queried participants' perceptions of iGeriCare, caregiver education, the implementation process, and their experience with facilitators and barriers. Transcripts were coded and analyzed using a grounded theory approach. The themes that emerged were organized using the Consolidated Framework for Implementation Research. Results: A total of 12 participants from a range of disciplines described their perceptions of iGeriCare and identified barriers and facilitators to the implementation of the intervention. The intervention was generally perceived as a high-quality resource for caregiver education and support, with many stakeholders highlighting the relative advantage of a web-based format. The intervention was seen to meet dementia caregiver needs, partially because of its flexibility, accessibility, and compatibility within existing clinical workflows. In addition, the intervention helps to overcome time constraints for both caregivers and clinicians. Conclusions: Study findings indicate a generally positive response to the use of internet-based interventions for dementia caregiver education. Results suggest that iGeriCare may be a useful clinical resource to complement traditional face-to-face and print material--based caregiver education. More comprehensive studies are required to identify the effectiveness and longevity of web-based caregiver education interventions and to better understand barriers and facilitators with regard to the implementation of technology-enhanced caregiver educational interventions in various health care settings. ",
doi="10.2196/21264",
url="http://aging.jmir.org/2020/2/e21264/",
url="http://www.ncbi.nlm.nih.gov/pubmed/33006563"
}


@Article{info:doi/10.2196/19897,
author="Li, Juan
and Maharjan, Bikesh
and Xie, Bo
and Tao, Cui",
title="A Personalized Voice-Based Diet Assistant for Caregivers of Alzheimer Disease and Related Dementias: System Development and Validation",
journal="J Med Internet Res",
year="2020",
month="Sep",
day="21",
volume="22",
number="9",
pages="e19897",
keywords="Alzheimer disease",
keywords="dementia",
keywords="diet",
keywords="knowledge",
keywords="ontology",
keywords="voice assistant",
abstract="Background: The world's aging population is increasing, with an expected increase in the prevalence of Alzheimer disease and related dementias (ADRD). Proper nutrition and good eating behavior show promise for preventing and slowing the progression of ADRD and consequently improving patients with ADRD's health status and quality of life. Most ADRD care is provided by informal caregivers, so assisting caregivers to manage patients with ADRD's diet is important. Objective: This study aims to design, develop, and test an artificial intelligence--powered voice assistant to help informal caregivers manage the daily diet of patients with ADRD and learn food and nutrition-related knowledge. Methods: The voice assistant is being implemented in several steps: construction of a comprehensive knowledge base with ontologies that define ADRD diet care and user profiles, and is extended with external knowledge graphs; management of conversation between users and the voice assistant; personalized ADRD diet services provided through a semantics-based knowledge graph search and reasoning engine; and system evaluation in use cases with additional qualitative evaluations. Results: A prototype voice assistant was evaluated in the lab using various use cases. Preliminary qualitative test results demonstrate reasonable rates of dialogue success and recommendation correctness. Conclusions: The voice assistant provides a natural, interactive interface for users, and it does not require the user to have a technical background, which may facilitate senior caregivers' use in their daily care tasks. This study suggests the feasibility of using the intelligent voice assistant to help caregivers manage patients with ADRD's diet. ",
doi="10.2196/19897",
url="http://www.jmir.org/2020/9/e19897/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32955452"
}


@Article{info:doi/10.2196/18169,
author="Backman, Chantal
and Harley, Anne
and Kuziemsky, Craig
and Mercer, Jay
and Peyton, Liam",
title="MyPath to Home Web-Based Application for the Geriatric Rehabilitation Program at Bruy{\`e}re Continuing Care: User-Centered Design and Feasibility Testing Study",
journal="JMIR Form Res",
year="2020",
month="Sep",
day="14",
volume="4",
number="9",
pages="e18169",
keywords="geriatric rehabilitation",
keywords="care transition",
keywords="technology",
keywords="hip fracture",
abstract="Background: When older adults return home from geriatric rehabilitation in a hospital, remembering the plethora of medical advice and medical instructions provided can be overwhelming for them and for their caregivers. Objective: The overall objective was to develop and test the feasibility of a novel web-based application called MyPath to Home that can be used to manage the personalized needs of geriatric rehabilitation patients during their transition from the hospital to home. Methods: This study involved (1) co-designing a patient- and clinician-tailored web-based application and (2) testing the feasibility of the application to manage the needs of geriatric rehabilitation patients when leaving the hospital. In phase 1, we followed a user-centered design process integrated with the modern agile software development methodology to iteratively co-design the application. The approach consisted of three cycles in which we engaged patients, caregivers, and clinicians to design a series of prototypes (cycles 1-3). In phase 2, we conducted a single-arm feasibility pilot test of MyPath to Home. Baseline and follow-up surveys, as well as select semistructured interviews were conducted. Results: In phase 1, semistructured interviews and talk-aloud sessions were conducted with patients/caregivers (n=5) and clinicians (n=17) to design the application. In phase 2, patients (n=30), caregivers (n=18), and clinicians (n=20) received access to use the application. Patients and their caregivers were asked to complete baseline and follow-up surveys. A total of 91\% (21/23) of patients would recommend this application to other patients. In addition, clinicians (n=6) and patients/caregivers (n=6) were interviewed to obtain further details on the value of the web-based application with respect to engaging patients and facilitating communication and sharing of information with the health care team. Conclusions: We were successful at designing the MyPath to Home prototype for patients and their caregivers to engage with their clinicians during the transition from geriatric rehabilitation to home. Further work is needed to increase the uptake and usage by clinicians, and determine if this translates to meaningful changes in clinical and functional outcomes. International Registered Report Identifier (IRRID): RR2-10.2196/11031 ",
doi="10.2196/18169",
url="http://formative.jmir.org/2020/9/e18169/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32924953"
}


@Article{info:doi/10.2196/19468,
author="Leng, Minmin
and Zhao, Yajie
and Xiao, Hongmei
and Li, Ce
and Wang, Zhiwen",
title="Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis",
journal="J Med Internet Res",
year="2020",
month="Sep",
day="9",
volume="22",
number="9",
pages="e19468",
keywords="family caregivers",
keywords="dementia",
keywords="supportive interventions",
keywords="internet",
keywords="systematic review",
abstract="Background: Caring for people with dementia is perceived as one of the most stressful and difficult forms of caring. Family caregivers always experience high levels of psychological burden and physical strain, so effective and practical support is essential. Internet-based supportive interventions can provide convenient and efficient support and education to potentially reduce the physical and psychological burden associated with providing care. Objective: This review aimed to (1) assess the efficacy of internet-based supportive interventions in ameliorating health outcomes for family caregivers of people with dementia, and (2) evaluate the potential effects of internet-based supportive intervention access by caregivers on their care recipients. Methods: An electronic literature search of the PubMed, EMBASE, Web of Science, CINAHL, Cochrane Library, and PsycINFO databases was conducted up to January 2020. Two reviewers (ML and YZ) worked independently to identify randomized controlled trials (RCTs) that met the inclusion criteria and independently extracted data. The quality of the included RCTs was evaluated using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Standardized mean differences (SMDs) with 95\% CIs were applied to calculate the pooled effect sizes. Results: In total, 17 RCTs met the eligibility criteria and were included in this systematic review. The meta-analysis showed that internet-based supportive interventions significantly ameliorated depressive symptoms (SMD=--0.21; 95\% CI --0.31 to --0.10; P<.001), perceived stress (SMD=--0.40; 95\% CI --0.55 to --0.24; P<.001), anxiety (SMD=--0.33; 95\% CI --0.51 to --0.16; P<.001), and self-efficacy (SMD=0.19; 95\% CI 0.05-0.33; P=.007) in dementia caregivers. No significant improvements were found in caregiver burden, coping competence, caregiver reactions to behavioral symptoms, or quality of life. Six studies assessed the unintended effects of internet-based supportive intervention access by caregivers on their care recipients. The results showed that internet-based supportive interventions had potential benefits on the quality of life and neuropsychiatric symptoms in care recipients. Conclusions: Internet-based supportive interventions are generally effective at ameliorating depressive symptoms, perceived stress, anxiety, and self-efficacy in dementia caregivers and have potential benefits on care recipients. Future studies are encouraged to adopt personalized internet-based supportive interventions to improve the health of family caregivers and their care recipients. Trial Registration: PROSPERO CRD42020162434; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=162434 ",
doi="10.2196/19468",
url="http://www.jmir.org/2020/9/e19468/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32902388"
}


@Article{info:doi/10.2196/18787,
author="Boumans, Roel
and van Meulen, Fokke
and van Aalst, William
and Albers, Joyce
and Janssen, Mar{\`e}se
and Peters-Kop, Marieke
and Huisman - de Waal, Getty
and van de Poll, Alexandra
and Hindriks, Koen
and Neerincx, Mark
and Olde Rikkert, Marcel",
title="Quality of Care Perceived by Older Patients and Caregivers in Integrated Care Pathways With Interviewing Assistance From a Social Robot: Noninferiority Randomized Controlled Trial",
journal="J Med Internet Res",
year="2020",
month="Sep",
day="9",
volume="22",
number="9",
pages="e18787",
keywords="integrated care pathway",
keywords="social robot",
keywords="quality of care",
keywords="noninferiority randomized controlled trial",
abstract="Background: Society is facing a global shortage of 17 million health care workers, along with increasing health care demands from a growing number of older adults. Social robots are being considered as solutions to part of this problem. Objective: Our objective is to evaluate the quality of care perceived by patients and caregivers for an integrated care pathway in an outpatient clinic using a social robot for patient-reported outcome measure (PROM) interviews versus the currently used professional interviews. Methods: A multicenter, two-parallel-group, nonblinded, randomized controlled trial was used to test for noninferiority of the quality of care delivered through robot-assisted care. The randomization was performed using a computer-generated table. The setting consisted of two outpatient clinics, and the study took place from July to December 2019. Of 419 patients who visited the participating outpatient clinics, 110 older patients met the criteria for recruitment. Inclusion criteria were the ability to speak and read Dutch and being assisted by a participating health care professional. Exclusion criteria were serious hearing or vision problems, serious cognitive problems, and paranoia or similar psychiatric problems. The intervention consisted of a social robot conducting a 36-item PROM. As the main outcome measure, the customized Consumer Quality Index (CQI) was used, as reported by patients and caregivers for the outpatient pathway of care. Results: In total, 75 intermediately frail older patients were included in the study, randomly assigned to the intervention and control groups, and processed: 36 female (48\%) and 39 male (52\%); mean age 77.4 years (SD 7.3), range 60-91 years. There was no significant difference in the total patient CQI scores between the patients included in the robot-assisted care pathway (mean 9.27, SD 0.65, n=37) and those in the control group (mean 9.00, SD 0.70, n=38): P=.08, 95\% CI --0.04 to 0.58. There was no significant difference in the total CQI scores between caregivers in the intervention group (mean 9.21, SD 0.76, n=30) and those in the control group (mean 9.09, SD 0.60, n=35): P=.47, 95\% CI --0.21 to 0.46. No harm or unintended effects occurred. Conclusions: Geriatric patients and their informal caregivers valued robot-assisted and nonrobot-assisted care pathways equally. Trial Registration: ClinicalTrials.gov NCT03857789; https://clinicaltrials.gov/ct2/show/NCT03857789 ",
doi="10.2196/18787",
url="http://www.jmir.org/2020/9/e18787/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32902387"
}


@Article{info:doi/10.2196/18120,
author="Latulippe, Karine
and Hamel, Christine
and Giroux, Dominique",
title="Integration of Conversion Factors for the Development of an Inclusive eHealth Tool With Caregivers of Functionally Dependent Older Persons: Social Justice Design",
journal="JMIR Hum Factors",
year="2020",
month="Aug",
day="26",
volume="7",
number="3",
pages="e18120",
keywords="caregivers",
keywords="aged",
keywords="help-seeking behavior",
keywords="community-based participatory research",
keywords="eHealth",
keywords="telemedicine",
keywords="mobile phone",
abstract="Background: eHealth can help reduce social health inequalities (SHIs); at the same time, it also has the potential to increase them. Several conversion factors can be integrated into the development of an eHealth tool to make it inclusive: (1) providing physical, technical, and financial access to eHealth; (2) enabling the integration of people at risk of SHIs into the research and development of digital projects targeting such populations (co-design or participatory research); (3) promoting consistency between the digital health literacy level of future users (FUs) and the eHealth tool; (4) developing an eHealth tool that is consistent with the technological skills of FUs; (5) ensuring that the eHealth tool is consistent with the help-seeking process of FUs; (6) respecting the learning capacities of FUs; and (7) being sensitive to FUs' cultural context. However, only little empirical evidence pointing out how these conversion factors can be integrated into an effective eHealth tool is available. Objective: On the basis of Amartya Sen's theoretical framework of social justice, the objective of this study was to explore how these 7 conversion factors can be integrated into an eHealth tool for caregivers of functionally dependent older persons. Methods: This study was based on a social justice design and participant observation as part of a large-scale research project funded by the Minist{\`e}re de la Famille through the Quebec Ami des A{\^i}n{\'e}s Program. Data were collected by recording the preparation sessions, the co-design and advisory committee sessions, as well as the debriefing sessions. The results were analyzed using Miles and Huberman's method. Results: A total of 78 co-designers participated in 11 co-design sessions, 24 preparation sessions, and 11 debriefing sessions. Of the 7 conversion factors, 5 could be explored in this experiment. The integration of conversion factors has been uneven. The participation of FUs in the development of the tool supports other conversion factors. Respecting the eHealth literacy level of FUs means that their learning abilities and technological skills are also respected because they are closely related to one another and are therefore practically difficult to be distinguished. Conclusions: Conversion factors can be integrated into the development of eHealth tools that are intended to be inclusive and contribute to curbing SHIs by integrating FU participation into the tool design process. ",
doi="10.2196/18120",
url="http://humanfactors.jmir.org/2020/3/e18120/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32845242"
}


@Article{info:doi/10.2196/18189,
author="Xie, Bo
and Tao, Cui
and Li, Juan
and Hilsabeck, C. Robin
and Aguirre, Alyssa",
title="Artificial Intelligence for Caregivers of Persons With Alzheimer's Disease and Related Dementias: Systematic Literature Review",
journal="JMIR Med Inform",
year="2020",
month="Aug",
day="20",
volume="8",
number="8",
pages="e18189",
keywords="Alzheimer disease",
keywords="dementia",
keywords="caregiving",
keywords="technology",
keywords="artificial intelligence",
abstract="Background: Artificial intelligence (AI) has great potential for improving the care of persons with Alzheimer's disease and related dementias (ADRD) and the quality of life of their family caregivers. To date, however, systematic review of the literature on the impact of AI on ADRD management has been lacking. Objective: This paper aims to (1) identify and examine literature on AI that provides information to facilitate ADRD management by caregivers of individuals diagnosed with ADRD and (2) identify gaps in the literature that suggest future directions for research. Methods: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for conducting systematic literature reviews, during August and September 2019, we performed 3 rounds of selection. First, we searched predetermined keywords in PubMed, Cumulative Index to Nursing and Allied Health Literature Plus with Full Text, PsycINFO, IEEE Xplore Digital Library, and the ACM Digital Library. This step generated 113 nonduplicate results. Next, we screened the titles and abstracts of the 113 papers according to inclusion and exclusion criteria, after which 52 papers were excluded and 61 remained. Finally, we screened the full text of the remaining papers to ensure that they met the inclusion or exclusion criteria; 31 papers were excluded, leaving a final sample of 30 papers for analysis. Results: Of the 30 papers, 20 reported studies that focused on using AI to assist in activities of daily living. A limited number of specific daily activities were targeted. The studies' aims suggested three major purposes: (1) to test the feasibility, usability, or perceptions of prototype AI technology; (2) to generate preliminary data on the technology's performance (primarily accuracy in detecting target events, such as falls); and (3) to understand user needs and preferences for the design and functionality of to-be-developed technology. The majority of the studies were qualitative, with interviews, focus groups, and observation being their most common methods. Cross-sectional surveys were also common, but with small convenience samples. Sample sizes ranged from 6 to 106, with the vast majority on the low end. The majority of the studies were descriptive, exploratory, and lacking theoretical guidance. Many studies reported positive outcomes in favor of their AI technology's feasibility and satisfaction; some studies reported mixed results on these measures. Performance of the technology varied widely across tasks. Conclusions: These findings call for more systematic designs and evaluations of the feasibility and efficacy of AI-based interventions for caregivers of people with ADRD. These gaps in the research would be best addressed through interdisciplinary collaboration, incorporating complementary expertise from the health sciences and computer science/engineering--related fields. ",
doi="10.2196/18189",
url="http://medinform.jmir.org/2020/8/e18189/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32663146"
}


@Article{info:doi/10.2196/16928,
author="Lai, Rhoda
and Tensil, Maria
and Kurz, Alexander
and Lautenschlager, T. Nicola
and Diehl-Schmid, Janine",
title="Perceived Need and Acceptability of an App to Support Activities of Daily Living in People With Cognitive Impairment and Their Carers: Pilot Survey Study",
journal="JMIR Mhealth Uhealth",
year="2020",
month="Jul",
day="31",
volume="8",
number="7",
pages="e16928",
keywords="Aged",
keywords="dementia",
keywords="memory disorders",
keywords="carers",
keywords="mobile apps",
abstract="Background: Modern technologies, including smartphone apps, have the potential to assist people with cognitive impairment with activities of daily living, allowing them to maintain their independence and reduce carer burden. However, such tools have seen a slow rate of uptake in this population, and data on the acceptability of assistive technologies in this population are limited. Objective: This pilot study included older adults with cognitive impairment and their carers, and explored the perceived needs for and acceptability of an app that was designed to be a simple assistive tool for activities of daily living. In particular, this study aimed to assess the acceptability of common app functions such as communication, reminder, navigation, and emergency tools in this population, and to compare patients' and carers' responses to them. Methods: A total of 24 German participants with mild cognitive impairment or dementia and their family carers separately completed two short questionnaires. The first questionnaire asked the participants with cognitive impairment and their carers to self-rate the patients' cognitive impairment levels and affinity to technology. Following a demonstration of the app, participants rated the usability and acceptability of the app and its functions in a second questionnaire. Results: Participants rated themselves as much less cognitively impaired than their carers did (P=.01), and insight into the level of support they received was low. The majority of the participants (19/24, 79\%) and their carers (20/24, 83\%) had low affinity to technology, and even after the demonstration, 63\% (15/24) of the participants had low interest in using the app. A breakdown of acceptability responses by app function revealed that participants were more amenable to the reminder function, the emergency feature, and a wearable form of the app. Features that centered around carers monitoring participants' movements were reported to be less acceptable to participants. Conclusions: This study highlights the importance of focusing on acceptability and the consumer's perceptions in the development of assistive technology for older adults with cognitive impairment. Participants showed an aversion to functions they perceived as eroding their independence, while functions that more closely aligned with independence and autonomy were perceived as more acceptable. ",
doi="10.2196/16928",
url="http://mhealth.jmir.org/2020/7/e16928/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32735223"
}


@Article{info:doi/10.2196/20310,
author="Hassan, Ibrahim Alhassan Yosri",
title="Challenges and Recommendations for the Deployment of Information and Communication Technology Solutions for Informal Caregivers: Scoping Review",
journal="JMIR Aging",
year="2020",
month="Jul",
day="29",
volume="3",
number="2",
pages="e20310",
keywords="informal caregivers",
keywords="ICT",
keywords="digital health",
keywords="eHealth",
keywords="health economics",
keywords="internet",
keywords="health technology",
keywords="ageing",
keywords="home care",
keywords="digital solutions",
abstract="Background: Information and communication technology (ICT)--based solutions have the potential to support informal caregivers in home care delivery. However, there are many challenges to the deployment of these solutions. Objective: The aim of this study was to review literature to explore the challenges of the deployment of ICT-based support solutions for informal caregivers and provide relevant recommendations on how to overcome these challenges. Methods: A scoping review methodology was used following the Arksey and O'Malley methodological framework to map the relevant literature. A search was conducted using PubMed, IEEE library, and Scopus. Publication screening and scrutiny were conducted following inclusion criteria based on inductive thematic analysis to gain insight into patterns of challenges rising from deploying ICT-based support solutions for informal caregivers. The analysis took place through an iterative process of combining, categorizing, summarizing, and comparing information across studies. Through this iterative process, relevant information was identified and coded under emergent broader themes as they pertain to each of the research questions. Results: The analysis identified 18 common challenges using a coding scheme grouping them under four thematic categories: technology-related, organizational, socioeconomic, and ethical challenges. These range from specific challenges related to the technological component of the ICT-based service such as design and usability of technology, to organizational challenges such as fragmentation of support solutions to socioeconomic challenges such as funding of technology and sustainability of solutions to ethical challenges around autonomy and privacy of data. For each identified challenge, recommendations were created on how to overcome it. The recommendations from this study can provide guidance for the deployment of ICT-based support solutions for informal caregivers. Conclusions: Despite a growing interest in the potential offered by ICT solutions for informal caregiving, diverse and overlapping challenges to their deployment still remain. Designers for ICTs for informal caregivers should follow participatory design and involve older informal caregivers in the design process as much as possible. A collaboration between designers and academic researchers is also needed to ensure ICT solutions are designed with the current empirical evidence in mind. Taking actions to build the digital skills of informal caregivers early in the caregiving process is crucial for optimal use of available ICT solutions. Moreover, the lack of awareness of the potential added-value and trust toward ICT-based support solutions requires strategies to raise awareness among all stakeholders---including policy makers, health care professionals, informal caregivers, and care recipients---about support opportunities offered by ICT. On the macro-level, policies to fund ICT solutions that have been shown to be effective at supporting and improving informal caregiver health outcomes via subsidies or other incentives should be considered. ",
doi="10.2196/20310",
url="http://aging.jmir.org/2020/2/e20310/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32723720"
}


@Article{info:doi/10.2196/17541,
author="Fuller-Tyszkiewicz, Matthew
and Richardson, Ben
and Little, Keriann
and Teague, Samantha
and Hartley-Clark, Linda
and Capic, Tanja
and Khor, Sarah
and Cummins, A. Robert
and Olsson, A. Craig
and Hutchinson, Delyse",
title="Efficacy of a Smartphone App Intervention for Reducing Caregiver Stress: Randomized Controlled Trial",
journal="JMIR Ment Health",
year="2020",
month="Jul",
day="24",
volume="7",
number="7",
pages="e17541",
keywords="mHealth",
keywords="mobile phone",
keywords="caregiver",
keywords="psychological stress",
keywords="mental health",
abstract="Background: Caregivers play a pivotal role in maintaining an economically viable health care system, yet they are characterized by low levels of psychological well-being and consistently report unmet needs for psychological support. Mobile app--based (mobile health [mHealth]) interventions present a novel approach to both reducing stress and improving well-being. Objective: This study aims to evaluate the effectiveness of a self-guided mobile app--based psychological intervention for people providing care to family or friends with a physical or mental disability. Methods: In a randomized, single-blind, controlled trial, 183 caregivers recruited through the web were randomly allocated to either an intervention (n=73) or active control (n=110) condition. The intervention app contained treatment modules combining daily self-monitoring with third-wave (mindfulness-based) cognitive-behavioral therapies, whereas the active control app contained only self-monitoring features. Both programs were completed over a 5-week period. It was hypothesized that intervention app exposure would be associated with decreases in depression, anxiety, and stress, and increases in well-being, self-esteem, optimism, primary and secondary control, and social support. Outcomes were assessed at baseline, postintervention, and 3-4 months postintervention. App quality was also assessed. Results: In total, 25\% (18/73) of the intervention participants were lost to follow-up at 3 months, and 30.9\% (34/110) of the participants from the wait-list control group dropped out before the postintervention survey. The intervention group experienced reductions in stress (b=?2.07; P=.04) and depressive symptoms (b=?1.36; P=.05) from baseline to postintervention. These changes were further enhanced from postintervention to follow-up, with the intervention group continuing to report lower levels of depression (b=?1.82; P=.03) and higher levels of emotional well-being (b=6.13; P<.001), optimism (b=0.78; P=.007), self-esteem (b=?0.84; P=.005), support from family (b=2.15; P=.001), support from significant others (b=2.66; P<.001), and subjective well-being (b=4.82; P<.001). On average, participants completed 2.5 (SD 1.05) out of 5 treatment modules. The overall quality of the app was also rated highly, with a mean score of 3.94 out of a maximum score of 5 (SD 0.58). Conclusions: This study demonstrates that mHealth psychological interventions are an effective treatment option for caregivers experiencing high levels of stress. Recommendations for improving mHealth interventions for caregivers include offering flexibility and customization in the treatment design. Trial Registration: Australian New Zealand Clinical Trial Registry ACTRN12616000996460; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371170 ",
doi="10.2196/17541",
url="http://mental.jmir.org/2020/7/e17541/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32706716"
}


@Article{info:doi/10.2196/15600,
author="Guisado-Fernandez, Estefania
and Blake, Catherine
and Mackey, Laura
and Silva, Alexandra Paula
and Power, Dermot
and O'Shea, Diarmuid
and Caulfield, Brian",
title="A Smart Health Platform for Measuring Health and Well-Being Improvement in People With Dementia and Their Informal Caregivers: Usability Study",
journal="JMIR Aging",
year="2020",
month="Jul",
day="23",
volume="3",
number="2",
pages="e15600",
keywords="Connected Health",
keywords="dementia",
keywords="informal caregiver",
keywords="home care",
keywords="home monitoring",
abstract="Background: Dementia is a neurodegenerative chronic condition characterized by a progressive decline in a person's memory, thinking, learning skills, and the ability to perform activities of daily living. Previous research has indicated that there are many types of technology interventions available in the literature that have shown promising results in improving disease progression, disease management, and the well-being of people with dementia (PwD) and their informal caregiver, thus facilitating dementia care and living. Technology-driven home care interventions, such as Connected Health (CH), could offer a convenient and low-cost alternative to traditional home care, providing an informal caregiver with the support they may need at home while caring for a PwD, improving their physical and mental well-being. Objective: This study aimed (1) to create a multidimensional profile for evaluating the well-being progression of the PwD--informal caregiver dyad for a year during their use of a CH platform, designed for monitoring PwD and supporting their informal caregivers at home, and (2) to conduct a long-term follow-up using the proposed well-being profile at different time-interval evaluations. Methods: The PwD--informal caregiver well-being profile was created based on the World Health Organization International Classification of Functioning considering the following outcomes: functional status, cognitive status, and quality of life for the PwD and mental well-being, sleeping quality, and burden for the informal caregiver. Over a year, comprehensive assessments of these outcomes were conducted every 3 months to evaluate the well-being of PwD--informal caregivers, using international and standardized validated questionnaires. Participants' demographic information was analyzed using descriptive statistics and presented as means and SDs. A nonparametric Friedman test was used to analyze the outcome changes and the progression in the PwD-caregiver dyads and to determine if those changes were statistically significant. Results: There were no significant changes in the well-being of PwD or their caregivers over the year of follow-up, with the majority of the PwD-caregiver dyads remaining stable. The only instances in which significant changes were observed were the functional status in the PwD and sleep quality in their caregivers. In each of these measures, post hoc pairwise comparisons did not indicate that the changes observed were related to the deployment of the CH platform. Conclusions: The follow-up of this population of PwD and their informal caregivers has shown that disease progression and physical and mental well-being do not change significantly during the time, being a slow and gradual process. The well-being profile created to analyze the potential impact of the CH platform on the PwD--informal caregiver dyad well-being, once validated, could be used as a future tool to conduct the same analyses with other CH technologies for this population. International Registered Report Identifier (IRRID): RR2-10.2196/13280 ",
doi="10.2196/15600",
url="http://aging.jmir.org/2020/2/e15600/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32706650"
}


@Article{info:doi/10.2196/16979,
author="Garvelink, Marjolein Mirjam
and Agbadj{\'e}, Tatiana Titilayo
and Freitas, Adriana
and Bergeron, Lysa
and Petitjean, Thomas
and Dugas, Mich{\`e}le
and Blair, Louisa
and Archambault, Patrick
and Roy, No{\'e}mie
and Jones, Allyson
and L{\'e}gar{\'e}, France",
title="Improving a Web-Based Tool to Support Older Adults to Stay Independent at Home: Qualitative Study",
journal="JMIR Mhealth Uhealth",
year="2020",
month="Jul",
day="22",
volume="8",
number="7",
pages="e16979",
keywords="internet-based intervention",
keywords="frail elderly",
keywords="caregivers",
keywords="decision making",
keywords="personal autonomy",
keywords="housing for the elderly",
abstract="Background: Older adults desire to stay independent at home for as long as possible. We developed an interactive website to inform older adults and caregivers about ways to achieve this. Objective:  This study aimed to perform an in-depth exploration among potential end users about how to improve the interactive website to better inform older adults and caregivers about ways to stay independent at home. Methods: To complement the results of a quantitative survey on the usability and acceptability of the website before implementation, we conducted a qualitative descriptive study. Using multiple recruitment strategies, we recruited a purposeful sample of older adults (aged ?65 years) and caregivers of older adults struggling to stay independent at home. We conducted face-to-face or telephonic interviews in either English or French. In addition, we collected sociodemographic characteristics, other characteristics of participants (eg, health, digital profile, and perception of retirement homes), and experiences with using the website (factors facilitating the use of the website, barriers to its use, and suggestions for improvement). Interviews were audio recorded, transcribed verbatim, and thematically analyzed by two researchers. Results: We recruited 15 participants, including 5 older adults (mean age 75 years, SD 6) and 10 caregivers (mean age 57 years, SD 14). The mean interview time was 32 min (SD 14). Most older adults had either mobility or health problems or both, and many of them were receiving home care services (eg, blood pressure measurement and body care). Overall, participants found the website easy to navigate using a computer, reassuring, and useful for obtaining information. Barriers were related to navigation (eg, difficult to navigate with a cellphone), relevance (eg, no specific section for caregivers), realism (eg, some resources presented are not state funded), understandability (eg, the actors' accents were difficult to understand), and accessibility (eg, not adapted for low digital literacy). Suggestions for improvement included a needs assessment section to direct users to the support appropriate to their needs, addition of information about moving into residential care, a section for caregivers, distinction between state-provided and private support services, simpler language, expansion of content to be relevant to all of Canada, and video subtitles for the hearing impaired. Conclusions: Users provided a wealth of information about the needs of older adults who were facing a loss of autonomy and about what such a website could usefully provide. The request for less generic and more personalized information reflects the wide range of needs that electronic health innovations, such as our interactive website, need to address. After integrating the changes suggested, the new website---Support for Older Adults to Stay Independent at Home (SUSTAIN)---will be implemented and made available to better assist older adults and caregivers in staying independent at home. ",
doi="10.2196/16979",
url="https://mhealth.jmir.org/2020/7/e16979",
url="http://www.ncbi.nlm.nih.gov/pubmed/32412908"
}


@Article{info:doi/10.2196/18466,
author="Casillas, Alejandra
and Cemballi, Gunshekar Anupama
and Abhat, Anshu
and Lemberg, Miya
and Portz, D. Jennifer
and Sadasivaiah, Shobha
and Ratanawongsa, Neda
and Semere, Wagahta
and Brown, Arleen
and Lyles, Rees Courtney",
title="An Untapped Potential in Primary Care: Semi-Structured Interviews with Clinicians on How Patient Portals Will Work for Caregivers in the Safety Net",
journal="J Med Internet Res",
year="2020",
month="Jul",
day="20",
volume="22",
number="7",
pages="e18466",
keywords="patient portal",
keywords="caregivers",
keywords="vulnerable populations",
keywords="digital divide",
keywords="mobile phone",
abstract="Background: Patients within safety-net settings are less likely to access health information on patient portals, despite expressed interest. Family and friends are important resources to assist these patients (ie, Medicaid recipients, older patients, patients with limited English proficiency) in navigating health systems, and provider support of the use of patient portals among these groups may also facilitate caregivers' use of their patients' portal. Objective: Because safety net providers work closely with caregivers to care for their patients, we used qualitative methods to explore safety net providers' perspectives on portal use among caregivers for their patients, especially as there is limited literature about caregivers' use of portals in the safety net. Methods: We conducted 45- to 60-min semistructured telephone interviews with providers from three large California safety-net health systems. The interviews focused on providers' experiences with caregivers, caregiver roles, and how the portal could be leveraged as a tool to support caregivers in their responsibilities. A total of three coders analyzed the interview transcripts using both deductive and inductive approaches and established a consensus regarding major themes. Results: Of the 16 participants interviewed, 4 specialized in geriatrics, and all held a leadership or administrative role. We described themes highlighting providers' recognition of potential benefits associated with caregiver portal use and specific challenges to caregiver engagement. Conclusions: Providers recognized the potential for portals to improve information delivery and communication by helping caregivers assist socially and medically complex patients in the safety net. Providers in safety net sites also discussed a clear need for better ways to keep in touch with patients and connect with caregivers, yet security and privacy are perhaps of higher importance in these settings and may pose challenges to portal adoption. They noted that caregivers of patients in the safety net likely face similar communication barriers as patients, especially with respect to digital literacy, health literacy, and English proficiency. Further research is needed to assess and support caregivers' interest and ability to access portals across barriers in health and digital literacy, and English proficiency. Portal platforms and health systems must also address specific strategies to uphold patient preferences while maintaining privacy and security. ",
doi="10.2196/18466",
url="https://www.jmir.org/2020/7/e18466",
url="http://www.ncbi.nlm.nih.gov/pubmed/32706709"
}


@Article{info:doi/10.2196/17851,
author="Du, Yan
and Paiva, Kristi
and Cebula, Adrian
and Kim, Seon
and Lopez, Katrina
and Li, Chengdong
and White, Carole
and Myneni, Sahiti
and Seshadri, Sudha
and Wang, Jing",
title="Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry",
journal="J Med Internet Res",
year="2020",
month="Jul",
day="6",
volume="22",
number="7",
pages="e17851",
keywords="diabetes",
keywords="Alzheimer disease",
keywords="dementia",
keywords="caregivers",
abstract="Background: Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome. Objective: This study aims to explore diabetes-related topics in the Alzheimer's Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. Methods: User posts on the Alzheimer's Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1\% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher's input as deemed necessary. Results: Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. Conclusions: The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted. ",
doi="10.2196/17851",
url="http://www.jmir.org/2020/7/e17851/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32628119"
}


@Article{info:doi/10.2196/17769,
author="Peterson, M. Colleen
and Mikal, P. Jude
and McCarron, R. Hayley
and Finlay, M. Jessica
and Mitchell, L. Lauren
and Gaugler, E. Joseph",
title="The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study",
journal="JMIR Aging",
year="2020",
month="Jun",
day="26",
volume="3",
number="1",
pages="e17769",
keywords="Alzheimer disease",
keywords="technology",
keywords="disease management",
keywords="personal health record",
keywords="family caregiving",
keywords="informal caregiving",
keywords="caregiver burnout",
keywords="web-based intervention",
keywords="assistive technology",
abstract="Background: Managing the complex and long-term care needs of persons living with Alzheimer disease and related dementias (ADRD) can adversely impact the health of informal caregivers and their care recipients. Web-based personal health records (PHRs) are one way to potentially alleviate a caregiver's burden by simplifying ADRD health care management Objective: This study aimed to evaluate Personal Health Record for Persons with Dementia and Their Family Caregivers (PHR-ADRD), a free web-based information exchange tool, using a multiphase mixed methods approach. Methods: Dementia caregivers (N=34) were surveyed for their well-being and perceptions of PHR-ADRD feasibility and utility at 6 and 12 months using close- and open-ended questions as well as a semistructured interview (n=8). Exploratory analyses compared participants' characteristics as well as PHR-ADRD use and experiences based on overall favorability status. Results: Feasibility and utility scores decreased over time, but a subset of participants indicated that the system was helpful. Quantitative comparisons could not explain why some participants indicated favorable, neutral, or unfavorable views of the system overall or had not engaged with PHR-ADRD. Qualitative findings suggested that technology literacy and primary care provider buy-in were barriers. Both qualitative and qualitative findings indicated that time constraints to learn and use the system affected most participants. Conclusions: Development and dissemination of PHRs for family caregivers of persons with ADRD should aim to make systems user-friendly for persons with limited time and technological literacy. Establishing health care provider buy-in may be essential to the future success of any PHR system. ",
doi="10.2196/17769",
url="http://aging.jmir.org/2020/1/e17769/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32589158"
}


@Article{info:doi/10.2196/18624,
author="Christie, Liane Hannah
and Boots, Maria Lizzy Mitzy
and Peetoom, Kirsten
and Tange, Johannes Huibert
and Verhey, Josef Frans Rochus
and de Vugt, Elizabeth Marjolein",
title="Developing a Plan for the Sustainable Implementation of an Electronic Health Intervention (Partner in Balance) to Support Caregivers of People With Dementia: Case Study",
journal="JMIR Aging",
year="2020",
month="Jun",
day="25",
volume="3",
number="1",
pages="e18624",
keywords="dementia",
keywords="caregiving",
keywords="eHealth",
keywords="implementation",
keywords="business modeling",
abstract="Background: Given the increasing use of digital interventions in health care, understanding how best to implement them is crucial. However, evidence on how to implement new academically developed interventions in complex health care environments is lacking. This case study offers an example of how to develop a theory-based implementation plan for Partner in Balance, an electronic health (eHealth) intervention to support the caregivers of people with dementia. Objective: The specific objectives of this study were to (1) formulate evidence-based implementation strategies, (2) develop a sustainable business model, and (3) integrate these elements into an implementation plan. Methods: This case study concerns Partner in Balance, a blended care intervention to support the caregivers of people with dementia, which is effective in improving caregiver self-efficacy, quality of life, and experienced control. The large-scale implementation of Partner in Balance took place in local dementia case-management services, local care homes, dementia support groups, and municipalities. Experiences from real-life pilots (n=22) and qualitative interviews with national stakeholders (n=14) were used to establish an implementation plan consisting of implementation strategies and a business model. Results: The main finding was the need for a business model to facilitate decision-making from potential client organizations, who need reliable pricing information before they can commit to training coaches and implementing the intervention. Additionally, knowledge of the organizational context and a wider health care system are essential to ensure that the intervention meets the needs of its target users. Based on these findings, the research team formulated implementation strategies targeted at the engagement of organizations and staff, dissemination of the intervention, and facilitation of long-term project management in the future. Conclusions: This study offers a theory-based example of implementing an evidence-based eHealth intervention in dementia health care. The findings help fill the knowledge gap on the eHealth implementation context for evidence-based eHealth interventions after the trial phase, and they can be used to inform individuals working to develop and sustainably implement eHealth. ",
doi="10.2196/18624",
url="http://aging.jmir.org/2020/1/e18624/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32584261"
}


@Article{info:doi/10.2196/14618,
author="Papa, Roberta
and Efthymiou, Areti
and Lamura, Giovanni
and Piccinini, Flavia
and Onorati, Giulia
and Papastavrou, Evridiki
and Tsitsi, Theologia
and Casu, Giulia
and Boccaletti, Licia
and Manattini, Alessandra
and Seneca, Rita
and Vaz de Carvalho, Carlos
and Dur{\~a}o, Rita
and Barbabella, Francesco
and Andr{\'e}asson, Frida
and Magnusson, Lennart
and Hanson, Elizabeth",
title="Review and Selection of Online Resources for Carers of Frail Adults or Older People in Five European Countries: Mixed-Methods Study",
journal="JMIR Mhealth Uhealth",
year="2020",
month="Jun",
day="17",
volume="8",
number="6",
pages="e14618",
keywords="informal carers",
keywords="mobile apps",
keywords="websites",
keywords="usability",
keywords="reliability",
abstract="Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage. Objective: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden). Methods: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions. Results: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7\%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0\%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer's wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare. Conclusions: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers. ",
doi="10.2196/14618",
url="http://mhealth.jmir.org/2020/6/e14618/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32554378"
}


@Article{info:doi/10.2196/20321,
author="Shu, Sara
and Woo, P. Benjamin K.",
title="Digital Media as a Proponent for Healthy Aging in the Older Chinese American Population: Longitudinal Analysis",
journal="JMIR Aging",
year="2020",
month="Jun",
day="16",
volume="3",
number="1",
pages="e20321",
keywords="geriatrics",
keywords="health promotion",
keywords="health education",
keywords="social media",
keywords="Parkinson disease",
keywords="fall prevention",
keywords="oral health",
keywords="pulmonary disease",
keywords="gastrointestinal health",
abstract="Background: Ensuring health literacy among underserved populations is essential amid an aging population. Accessible and appropriate (both culturally and linguistically) information is important when considering digital media education for older Chinese Americans. Objective: This study aims to investigate how social media fare over time in disseminating health information and how we may most effectively educate this population. Methods: For this study, 5 geriatric-themed educational videos about Parkinson disease, fall prevention, gastrointestinal health, oral health, and pulmonary disease were uploaded to YouTube. Data were collected over a 40-month period. Descriptive statistics and chi-square analysis were used to compare results from the first and second 20-month periods. Results: In 40 months, the 5 videos in aggregate accrued 1171.1 hours of watch time, 7299 views, and an average view duration of 9.6 minutes. Comparing the first and second 20-month periods, there was a significant increase in mobile device usage, from 79.4\% (3541/4458) to 83.3\% (2367/2841). There was no significant difference in the usage of various external traffic sources and methods of sharing, with WhatsApp accounting for the majority of sharing in both 20-month periods. Conclusions: Our study provides insight into where to focus future strategies to optimize digital media content, and how to best recruit, direct, and disseminate health education to an older adult Chinese American population. Combining the success of YouTube, social media, and messaging platforms such as WhatsApp can help to transcend cultural and linguistic barriers to promote healthy aging. ",
doi="10.2196/20321",
url="http://aging.jmir.org/2020/1/e20321/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32543447"
}


@Article{info:doi/10.2196/15480,
author="Efthymiou, Areti
and Papastavrou, Evridiki
and Middleton, Nicos
and Markatou, Artemis
and Sakka, Paraskevi",
title="How Caregivers of People With Dementia Search for Dementia-Specific Information on the Internet: Survey Study",
journal="JMIR Aging",
year="2020",
month="May",
day="19",
volume="3",
number="1",
pages="e15480",
keywords="caregivers",
keywords="internet",
keywords="dementia",
keywords="eHealth",
abstract="Background: During the last decade, more research has focused on web-based interventions delivered to support caregivers of people with dementia. However, little information is available in relation to internet use among caregivers in general, especially those caring for people with dementia. Objective: The aim of this study was to evaluate the dementia-related internet use and factors that may be associated with its use among caregivers of people with dementia in Greece. Methods: Secondary data from the Greek Dementia Survey of the Athens Association of Alzheimer's Disease and Related Disorders were collected from April to June 2017. A total of 580 caregivers of people with dementia participated in the study. Results: The majority of the caregivers reported that they had used the internet in the previous 3 months (84.1\%, 488/580). Nearly half of the caregivers (47.5\%, 276/580) reported that they had received dementia services online. Bivariate analysis showed that a dementia-specific search of information was associated with age, education, kinship, and years of care. Age (odds ratio [OR] 2.362, 95\% CI 1.05-5.33) and education (OR 2.228, 95\% CI 1.01-4.94) were confirmed as predictors, with younger caregivers and those with higher educational attainment being more likely to search for dementia-specific information. Use of the internet to search for dementia information was only related to hours of care. The internet use by caregivers within the previous 3 months was associated with variables such as age, education, occupation, kinship, years of care, and self-reported impact on physical and social health. Conclusions: Caregivers of people with dementia in Greece, as in the other southern European countries, are essential agents of the national health system. The existing short- and long-term respite care services are limited or nonexistent. Currently, caregivers receive mostly support and education from memory clinics and municipality consultation centers, which are mainly based in central cities in Greece. Despite the dementia awareness movement in Greece, there is still space to integrate the role of technology in the support and education of caregivers. Development of training programs for enhancing electronic health literacy skills as well as web-based services provision could support Greek caregivers in their everyday caring tasks. ",
doi="10.2196/15480",
url="http://aging.jmir.org/2020/1/e15480/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32427105"
}


@Article{info:doi/10.2196/17255,
author="Christie, Liane Hannah
and Schichel, Philomela Mignon Chlo{\"e}
and Tange, Johannes Huibert
and Veenstra, Yvonne Marja
and Verhey, Josef Frans Rochus
and de Vugt, Elizabeth Marjolein",
title="Perspectives From Municipality Officials on the Adoption, Dissemination, and Implementation of Electronic Health Interventions to Support Caregivers of People With Dementia: Inductive Thematic Analysis",
journal="JMIR Aging",
year="2020",
month="May",
day="13",
volume="3",
number="1",
pages="e17255",
keywords="dementia",
keywords="caregiver",
keywords="internet",
keywords="eHealth",
keywords="implementation, senior friendly communities",
abstract="Background: Very few evidence-based electronic health (eHealth) interventions for caregivers of people with dementia are implemented into practice. As part of a cross-border collaboration focusing on dementia and depression in older people, two eHealth interventions for caregivers of people with dementia (``Myinlife'' and ``Partner in Balance'') were adopted by nine municipalities in the Euregion Meuse-Rhine. Objective: This study aimed to (1) identify determinants for the implementation of eHealth interventions for caregivers of people with dementia in a municipality context and (2) formulate implementation strategies for these interventions. Methods: Eight municipality officials were interviewed using open-ended, semistructured interviews about their background, thoughts on the implementation of the intervention, recommended strategies, and thoughts on eHealth in general. One additional municipality discontinued the implementation project and submitted answers to the interview questions via email. The interviews were transcribed and independently analyzed using inductive thematic analysis. Results: The interviews provided information on the perspectives of municipality officials on implementing eHealth for caregivers of people with dementia in their local communities. Key findings from the inductive thematic analysis included the importance of face-to-face interviews in developing tailor-made implementation plans, the need for regular meetings, the enthusiasm of municipality officials to implement these interventions, the need for long-term sustainability planning through collecting data on the required resources and benefits, and the effect of name brand recognition in adoption. Conclusions: The findings contribute toward filling the previously identified gap in the literature on the implementation context of eHealth interventions for caregivers of people with dementia. Municipality officials' views indicated which implementation determinants they expected would influence the adoption, dissemination, and future implementation of eHealth interventions for caregivers of people with dementia in a municipal context. These insights were applied to tailored implementation strategies to facilitate the future implementation of interventions such as Myinlife and Partner in Balance. ",
doi="10.2196/17255",
url="http://aging.jmir.org/2020/1/e17255/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32401217"
}


@Article{info:doi/10.2196/16423,
author="Trail, Thomas
and Friedman, Esther
and Rutter, M. Carolyn
and Tanielian, Terri",
title="The Relationship Between Engagement in Online Support Groups and Social Isolation Among Military Caregivers: Longitudinal Questionnaire Study",
journal="J Med Internet Res",
year="2020",
month="Apr",
day="23",
volume="22",
number="4",
pages="e16423",
keywords="caregivers",
keywords="family caregivers",
keywords="social isolation",
keywords="loneliness",
keywords="depression",
keywords="social support",
keywords="online intervention",
keywords="self-help groups",
keywords="veterans health",
abstract="Background: There is a lack of research on the effectiveness of online peer support groups for reducing social isolation and depressive symptoms among caregivers, and previous research has mixed results. Objective: This study aimed to test whether military caregivers who joined a new online peer support community or engaged with an existing online community experienced decreased perceived social isolation and improved depressive symptoms over 6 months. Methods: We conducted a longitudinal study of 212 military caregivers who had newly joined an online community and those who were members of other military caregiver groups. Multiple indicators of perceived social isolation and depressive symptoms were assessed at baseline and at 3 and 6 months. Results: Compared with caregivers in the comparison group, caregivers who joined the new group experienced less perceived social isolation at 3 months (eg, number of caregivers in social network [unstandardized regression coefficients] b=0.49, SE 0.19, 95\% CI 0.87 to 0.02), but this effect did not persist at 6 months. Those who engaged more with new or existing groups experienced less perceived social isolation over time (eg, number of caregivers in social network b=0.18, SE 0.06, 95\% CI 0.02 to 0.27), and this relationship was mediated by increased interactions with other military caregivers (95\% CI 0.0046 to 0.0961). Engagement with an online group was not associated with improvements in depressive symptoms. Conclusions: Online communities might help reduce social isolation when members engage with the group, but more intensive treatment is needed to improve depressive symptoms. ",
doi="10.2196/16423",
url="http://www.jmir.org/2020/4/e16423/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32324141"
}


@Article{info:doi/10.2196/14583,
author="Della Mea, Vincenzo
and Popescu, Horia Mihai
and Gonano, Dario
and Petaros, Toma?
and Emili, Ivo
and Fattori, Grazia Maria",
title="A Communication Infrastructure for the Health and Social Care Internet of Things: Proof-of-Concept Study",
journal="JMIR Med Inform",
year="2020",
month="Feb",
day="25",
volume="8",
number="2",
pages="e14583",
keywords="health services for the aged",
keywords="remote sensing technology",
keywords="sensors and actuators",
keywords="embedded systems",
keywords="Internet of Things",
keywords="LoRaWAN",
abstract="Background: Increasing life expectancy and reducing birth rates indicate that the world population is becoming older, with many challenges related to quality of life for old and fragile people, as well as their informal caregivers. In the last few years, novel information and communication technology techniques generally known as the Internet of Things (IoT) have been developed, and they are centered around the provision of computation and communication capabilities to objects. The IoT may provide older people with devices that enable their functional independence in daily life by either extending their own capacity or facilitating the efforts of their caregivers. LoRa is a proprietary wireless transmission protocol optimized for long-range, low-power, low--data-rate applications. LoRaWAN is an open stack built upon LoRa. Objective: This paper describes an infrastructure designed and experimentally developed to support IoT deployment in a health care setup, and the management of patients with Alzheimer's disease and dementia has been chosen for a proof-of-concept study. The peculiarity of the proposed approach is that it is based on the LoRaWAN protocol stack, which exploits unlicensed frequencies and allows for the use of very low-power radio devices, making it a rational choice for IoT communication. Methods: A complete LoRaWAN-based infrastructure was designed, with features partly decided in agreement with caregivers, including outdoor patient tracking to control wandering; fall recognition; and capability of collecting data for further clinical studies. Further features suggested by caregivers were night motion surveillance and indoor tracking for large residential structures. Implementation involved a prototype node with tracking and fall recognition capabilities, a middle layer based on an existing network server, and a Web application for overall management of patients and caregivers. Tests were performed to investigate indoor and outdoor capabilities in a real-world setting and study the applicability of LoRaWAN in health and social care scenarios. Results: Three experiments were carried out. One aimed to test the technical functionality of the infrastructure, another assessed indoor features, and the last assessed outdoor features. The only critical issue was fall recognition, because a slip was not always easy to recognize. Conclusions: The project allowed the identification of some advantages and restrictions of the LoRaWAN technology when applied to the health and social care sectors. Free installation allows the development of services that reach ranges comparable to those available with cellular telephony, but without running costs like telephony fees. However, there are technological limitations, which restrict the scenarios in which LoRaWAN is applicable, although there is room for many applications. We believe that setting up low-weight infrastructure and carefully determining whether applications can be concretely implemented within LoRaWAN limits might help in optimizing community care activities while not adding much burden and cost in information technology management. ",
doi="10.2196/14583",
url="http://medinform.jmir.org/2020/2/e14583/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32130158"
}


@Article{info:doi/10.2196/14496,
author="Milios, Athena
and McGrath, Patrick
and Baillie, Hannah",
title="A Weekly, Evidence-Based Health Letter for Caregivers (90Second Caregiver): Usability Study",
journal="JMIR Form Res",
year="2020",
month="Feb",
day="12",
volume="4",
number="2",
pages="e14496",
keywords="caregivers",
keywords="mental health",
keywords="usability",
keywords="depression",
keywords="anxiety",
keywords="stigma",
keywords="hope",
keywords="health information",
keywords="persuasive design",
abstract="Background: Informal caregivers are family members or close friends who provide unpaid help to individuals with acute or chronic health conditions so that they can manage daily life tasks. The greatest source of health information is the internet for meeting the needs of caregivers. However, information on the internet may not be scientifically valid, it may be written in language that is difficult to read, and is often in very large doses. 90Second Caregiver is a health letter whose aim is to disseminate knowledge to caregivers in a user-friendly, weekly format, in order to improve their wellbeing. Objective: The main objective was to test a sample of 90Second Caregiver health letters in order to assess their usability and to optimize the design and content of the health letters. Methods: Usability research themes were assessed using semi-structured phone interviews, incorporating the Think Aloud method with retrospective questioning. Results: Usability was assessed in the context of five main themes: understandability and learnability, completeness, relevance, and quality and credibility of the health letter content, as well as design and format. Caregivers generally provided positive feedback regarding the usability of the letters. The usability feedback was used to refine 90Second Caregiver in order to improve the design and content of the series. Based on the results of this study, it may be of maximum benefit to target the series towards individuals who are new to caregiving or part-time caregivers, given that these caregivers of the sample found the letters more useful and relevant and had the most positive usability experiences. Conclusions: The findings assisted in the improvement of the 90Second Caregiver template, which will be used to create future health letters and refine the letters that have already been created. The findings have implications for who the 90Second Caregiver series should be targeting (ie, newer or part-time caregivers) in order to be maximally impactful in improving mental health and wellbeing-related outcomes for caregivers, such as self-efficacy and caregiving knowledge. The results of this study may be generalizable to the examination of other electronic health information formats, making them valuable to future researchers testing the usability of health information products. In addition, the methods used in this study are useful for usability hypothesis generation. Lastly, our 90Second delivery approach can generate information useful for a set of similar products (eg, weekly health letters targeted towards other conditions/populations). ",
doi="10.2196/14496",
url="https://formative.jmir.org/2020/2/e14496",
url="http://www.ncbi.nlm.nih.gov/pubmed/32049064"
}


@Article{info:doi/10.2196/15290,
author="Guo, Yuqi
and Yang, Fan
and Hu, Fei
and Li, Wei
and Ruggiano, Nicole
and Lee, Yun Hee",
title="Existing Mobile Phone Apps for Self-Care Management of People With Alzheimer Disease and Related Dementias: Systematic Analysis",
journal="JMIR Aging",
year="2020",
month="Jan",
day="24",
volume="3",
number="1",
pages="e15290",
keywords="alzheimer disease",
keywords="dementia",
keywords="self-care",
keywords="mobile phone apps",
abstract="Background: Alzheimer disease and related dementias (AD/RD) are progressive neurocognitive disorders that currently affect approximately 50 million people worldwide. Mobile phone apps have been well-integrated into daily lives and can be used to deliver and promote health care. There is an increase in the use of technology to provide care and support to AD/RD patients and their families. Objective: This study aimed to review apps designed for AD/RD patients and analyze the benefits of, and challenges to, such technological solutions. Methods: A systematic approach was applied to review the availability, content, features, and quality of mobile phone apps to support self-care among AD/RD patients. Results: The initial search for this review was conducted in January 2019, and the screening and analysis of the included apps were completed in May 2019. A total of 14 apps were included from an initial search of 245 apps. The top 3 features were alert (9/14, 64\%), self-care tips (6/14, 42\%), and social networking capacity (5/14, 35\%). On average, the readability of the apps was a tenth-grade reading level (SD 3.06). The overall quality was 3.71 out of 5 (SD 1.37). Conclusions: Our findings suggest that currently available apps for AD/RD patients may not meet complex needs and may be challenging to use, given the possible impaired communication ability associated with AD/RD. Therefore, high-quality apps need to be developed and rigorously evaluated for feasibility and efficacy. ",
doi="10.2196/15290",
url="http://aging.jmir.org/2020/1/e15290/",
url="http://www.ncbi.nlm.nih.gov/pubmed/32012045"
}


@Article{info:doi/10.2196/15027,
author="Donelle, Lorie
and Regan, Sandra
and Kerr, Michael
and Zwarenstein, Merrick
and Bauer, Michael
and Warner, Grace
and Isaranuwatchai, Wanrudee
and Zecevic, Aleksandra
and Borycki, Elizabeth
and Forbes, Dorothy
and Weeks, Lori
and Leipert, Bev
and Read, Emily",
title="Caring Near and Far by Connecting Community-Based Clients and Family Member/Friend Caregivers Using Passive Remote Monitoring: Protocol for a Pragmatic Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2020",
month="Jan",
day="10",
volume="9",
number="1",
pages="e15027",
keywords="home care",
keywords="family caregiver",
keywords="friend caregiver",
keywords="remote sensor",
keywords="older adults",
keywords="caregiver burden",
abstract="Background: Significant chronic disease challenges exist among older adults. However, most older adults want to remain at home even if their health conditions challenge their ability to live independently. Yet publicly funded home care resources are scarce, private home care is expensive, and family/friend caregivers have limited capacity. Many older adults with chronic illness would require institutional care without the support from family member/friend caregivers. This role raises the risk of physical health problems, stress, burnout, and depression. Passive remote monitoring (RM), the use of sensors that do not require any action by the individual for the system to work, may increase the older adult's ability to live independently while also providing support and peace of mind to both the client and the family member/friend caregiver. Objective: This paper presents the protocol of a study conducted in two provinces in Canada to investigate the impact of RM along with usual home care (the intervention) versus usual home care alone (control) on older adults with complex care. The primary outcome for this study is the occurrence of and time to events such as trips to emergency, short-term admission to the hospital, terminal admission to the hospital awaiting admission to long-term care, and direct admission to long-term care. The secondary outcomes for this study are (1) health care costs, (2) client functional status and quality of life in the home, (3) family/friend caregiver stress, and (4) family/friend caregiver functional health status. Methods: The design for this study is an unblinded pragmatic randomized controlled trial (PRCT) with two parallel arms in two geographic strata (Ontario and Nova Scotia). Quantitative and qualitative methodologies will be used to address the study objectives. This PRCT is conceptually informed by the principles of client-centered care and viewing the family as the client and aims at providing supported self-management. Results: This study is supported by the Canadian Institutes for Health Research. A primary completion date is anticipated in fall 2022. Conclusions: Findings from this real-world rigorous randomized trial will support Canadian decision-makers, providers, and clients and their caregivers in assessing the health, well-being, and economic benefits and the social and technological challenges of integrating RM technologies to support older adults to stay in their home, including evaluating the impact on the burden of care experienced by family/friend caregivers. With an aging population, this technology may reduce institutionalization and promote safe and independent living for the elderly as long as possible. Trial Registration: International Standard Randomised Controlled Trial Number (ISRCTN) 79884651; http://www.isrctn.com/ISRCTN79884651 International Registered Report Identifier (IRRID): DERR1-10.2196/15027 ",
doi="10.2196/15027",
url="https://www.researchprotocols.org/2020/1/e15027",
url="http://www.ncbi.nlm.nih.gov/pubmed/31922492"
}


@Article{info:doi/10.2196/12381,
author="Mowforth, Daniel Oliver
and Davies, Marshall Benjamin
and Kotter, Reinhard Mark",
title="Quality of Life Among Informal Caregivers of Patients With Degenerative Cervical Myelopathy: Cross-Sectional Questionnaire Study",
journal="Interact J Med Res",
year="2019",
month="Nov",
day="7",
volume="8",
number="4",
pages="e12381",
keywords="spinal cord diseases",
keywords="spondylosis",
keywords="spinal osteophytosis",
keywords="surveys and questionnaires",
keywords="quality of life",
keywords="chronic disease",
abstract="Background: Degenerative cervical myelopathy (DCM) is a common, chronic neurological condition that severely affects individuals by causing a range of disabling symptoms, frequently at a time around the peak of their careers. Subsequently, individuals with DCM often become dependent on informal care arrangements. The significant economic contribution of informal care and its burden on care providers are becoming increasingly recognized. Objective: This study aimed to measure the quality of life of DCM informal caregivers and provide preliminary insight into possible contributing factors. Methods: Carers of individuals with DCM completed a Web-based survey hosted by Myelopathy.org, an international DCM charity. Carer quality of life was assessed in the form of caregiver happiness and 7 dimensions of carer burden using the Care-Related Quality of Life (CarerQol) instrument. The relationships between patient disease severity, patient pain, and carer quality of life were investigated. Differences in carer quality of life were assessed across patient and carer demographic groups, including between UK and US carers. Results: DCM caregivers experienced substantial burden as a result of their caregiving (mean CarerQol-7D=64.1; 95\% CI 58.8-69.5) and low happiness (mean CarerQol-VAS [Visual Analog Scale]=6.3; 95\% CI 5.7-6.9). Burden was high and happiness was low in DCM carers when compared with a large, mixed-disease study of adult informal carers where CarerQol-7D was 79.1 and CarerQol-VAS was 7.1. No significant relationship was found between DCM carer quality of life and patient disease severity and pain scores. DCM carer quality of life appeared uniform across all patient and carer demographic groups. Conclusions: Caring for individuals with DCM is associated with reduced quality of life in the form of significant burden and reduced happiness. Reductions appear greater in DCM than in other diseases investigated. However, no simple relationship was identified between individual patient or carer factors and carer quality of life. ",
doi="10.2196/12381",
url="http://www.i-jmr.org/2019/4/e12381/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31697240"
}


@Article{info:doi/10.2196/15775,
author="Chaar, Dima
and Shin, Youn Ji
and Mazzoli, Amanda
and Vue, Rebecca
and Kedroske, Jacob
and Chappell, Grant
and Hanauer, A. David
and Barton, Debra
and Hassett, L. Afton
and Choi, Won Sung",
title="A Mobile Health App (Roadmap 2.0) for Patients Undergoing Hematopoietic Stem Cell Transplant: Qualitative Study on Family Caregivers' Perspectives and Design Considerations",
journal="JMIR Mhealth Uhealth",
year="2019",
month="Oct",
day="24",
volume="7",
number="10",
pages="e15775",
keywords="caregivers",
keywords="allogeneic hematopoietic stem cell transplant",
keywords="home interviews",
keywords="user experience",
keywords="mobile health apps",
abstract="Background: Hematopoietic stem cell transplantation (HCT), also referred to as blood and marrow transplantation (BMT), is a high-risk, but potentially curative therapy for a number of cancer and noncancer conditions. BMT Roadmap (Roadmap 1.0) is a mobile health app that was developed as a family caregiver--facing tool to provide informational needs about the health status of patients undergoing inpatient HCT. Objective: This study explored the views and perceptions of family caregivers of patients undergoing HCT and their input regarding further technology development and expansion of BMT Roadmap into the outpatient setting (referred to as Roadmap 2.0). Methods: Semistructured qualitative interviews were conducted among 24 family caregivers. Questions were developed from existing literature coupled with prior in-depth observations and interviews in hospital-based settings to explore the study objectives. Participants were recruited during routine outpatient clinic appointments of HCT patients, and all interviews were conducted in the participants' homes, the setting in which Roadmap 2.0 is intended for use. A thematic analysis was performed using a consistent set of codes derived from our prior research. New emerging codes were also included, and the coding structure was refined with iterative cycles of coding and data collection. Results: Four major themes emerged through our qualitative analysis: (1) stress related to balancing caregiving duties; (2) learning and adapting to new routines (resilience); (3) balancing one's own needs with the patient's needs (insight); and (4) benefits of caregiving. When caregivers were further probed about their views on engagement with positive activity interventions (ie, pleasant activities that promote positive emotions and well-being such as expressing gratitude or engaging in activities that promote positive thoughts, emotions, and behaviors), they preferred a ``menu'' of positive activities to help support caregiver health and well-being. Conclusions: This study involved family caregivers as participants in the development of new components for Roadmap 2.0. Our research provided a further understanding of the many priorities that hematopoietic stem cell transplant family caregivers face while maintaining balance in their lives. Their schedules can often be unpredictable, even more so once the patient is discharged from the hospital. Our findings suggest that expanding Roadmap 2.0 into the outpatient setting may provide critical caregiver support and that HCT caregivers are interested in and willing to engage in positive activities that may enhance well-being and attenuate the stress associated with caregiving. International Registered Report Identifier (IRRID): RR2-10.2196/resprot.4918 ",
doi="10.2196/15775",
url="http://mhealth.jmir.org/2019/10/e15775/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31651402"
}


@Article{info:doi/10.2196/14254,
author="Duggleby, Wendy
and Ploeg, Jenny
and McAiney, Carrie
and Fisher, Kathryn
and Jovel Ruiz, Kathya
and Ghosh, Sunita
and Peacock, Shelley
and Markle-Reid, Maureen
and Williams, Allison
and Triscott, Jean
and Swindle, Jennifer",
title="A Comparison of Users and Nonusers of a Web-Based Intervention for Carers of Older Persons With Alzheimer Disease and Related Dementias: Mixed Methods Secondary Analysis",
journal="J Med Internet Res",
year="2019",
month="Oct",
day="17",
volume="21",
number="10",
pages="e14254",
keywords="Web-based intervention",
keywords="carers",
keywords="dementia",
keywords="multiple chronic conditions",
keywords="program evaluation",
abstract="Background: A self-administered Web-based intervention was developed to help carers of persons with Alzheimer disease and related dementias (ADRD) and multiple chronic conditions (MCC) deal with the significant transitions they experience. The intervention, My Tools 4 Care (MT4C), was evaluated during a pragmatic mixed methods randomized controlled trial with 199 carers. Those in the intervention group received free, password-protected access to MT4C for three months. MT4C was found to increase hope in participants at three months compared with the control group. However, in the intervention group, 22\% (20/92) did not use MT4C at all during the three-month period. Objective: This mixed methods secondary analysis aimed to (1) examine differences at three months in the outcomes of hope, self-efficacy, and health-related quality of life (HRQOL) scores in users (ie, those who used MT4C at least once during the three-month period) compared with nonusers and (2) identify reasons for nonuse. Methods: Data from the treatment group of a pragmatic mixed methods randomized controlled trial were used. Through audiotaped telephone interviews, trained research assistants collected data on participants' hope (Herth Hope Index; HHI), self-efficacy (General Self-Efficacy Scale; GSES), and HRQOL (Short-Form 12-item health survey version 2; SF-12v2) at baseline, one month, and three months. Treatment group participants also provided feedback on MT4C through qualitative telephone interviews at one month and three months. Analysis of covariance was used to determine differences at three months, and generalized estimating equations were used to determine significant differences in HHI, GSES, and SF-12v2 between users and nonusers of MT4C from baseline to three months. Interview data were analyzed using content analysis and integrated with quantitative data at the result stage. Results: Of the 101 participants at baseline, 9 (9\%) withdrew from the study, leaving 92 participants at three months of which 72 (78\%) used MT4C at least once; 20 (22\%) participants did not use it at all. At baseline, there were no statistically significant differences in demographic characteristics and in outcome variables (HHI, GSES, and SF-12v2 mental component score and physical component score) between users and nonusers. At three months, participants who used MT4C at least once during the three-month period (users) reported higher mean GSES scores (P=.003) than nonusers. Over time, users had significantly higher GSES scores than nonusers (P=.048). Reasons for nonuse of MT4C included the following: caregiving demands, problems accessing MT4C (poor connectivity, computer literacy, and navigation of MT4C), and preferences (for paper format or face-to-face interaction). Conclusions: Web-based interventions, such as MT4C, have the potential to increase the self-efficacy of carers of persons with ADRD and MCC. Future research with MT4C should consider including educational programs for computer literacy and providing alternate ways to access MT4C in addition to Web-based access. Trial Registration: ClinicalTrials.gov NCT02428387; https://clinicaltrials.gov/ct2/show/NCT02428387 ",
doi="10.2196/14254",
url="https://www.jmir.org/2019/10/e14254",
url="http://www.ncbi.nlm.nih.gov/pubmed/31625947"
}


@Article{info:doi/10.2196/13002,
author="Huis in het Veld, G. Judith
and van Asch, M. Iris F.
and Willemse, M. Bernadette
and Verkade, Paul-Jeroen
and Pot, Margriet Anne
and Blom, M. Marco
and Groot Zwaaftink, M. Rob B.
and Francke, L. Anneke",
title="Process Evaluation of Nurse-Led Online Self-Management Support for Family Caregivers to Deal With Behavior Changes of a Relative With Dementia (Part 1): Mixed Methods Study",
journal="J Med Internet Res",
year="2019",
month="Oct",
day="11",
volume="21",
number="10",
pages="e13002",
keywords="dementia",
keywords="internet",
keywords="eHealth",
keywords="caregiver",
abstract="Background: Coping with behavioral changes is a daily challenge for family caregivers in all phases of dementia, and assistance is needed for it. An online self-management support intervention was therefore developed and conducted involving the following elements: (1) email contact with a specialized dementia nurse, (2) online videos, and (3) e-bulletins containing information about behavior changes and how to manage them. Objective: The aim of this study was to understand (1) family caregivers' actual use of various elements of the online self-management support, (2) family caregivers' evaluation and satisfaction with the various elements, and (3) nurses' usage and evaluations of the online support through the tailored email contacts. Methods: A mixed methods design was used in this process evaluation, combining quantitative and qualitative methods including analyses of dementia nurses' registration forms, the number of clicks on online videos and e-bulletins, evaluation questions answered by family caregivers in a survey questionnaire, semistructured interviews with family caregivers and nurses, and analysis of the content of the email contacts. Results: The actual use of various elements of the online self-management support by family caregivers varied: 78\% (21/27) of family caregivers had an email contact with the specialist nurse, 80\% (43/54) of family caregivers clicked on an online video, and 37\% (30/81) clicked on an e-bulletin. Family caregivers showed positive evaluations and satisfaction. The tailor-made approach in the personal email contacts in particular was valued by the family caregivers. Nurses' evaluations about providing self-management support online were mixed as it was a relatively new task for them. Conclusions: An important insight is that not all participants made optimum use of the various elements of the intervention. Nurses also said that the email contacts were more often used to express feelings about coping with behavioral changes. More research is needed to investigate the reasons why people accept, adopt, and adhere to online interventions to reduce cases where they are not used and to back them up appropriately with tailored (online) information and advice for their personal situations. ",
doi="10.2196/13002",
url="https://www.jmir.org/2019/10/e13002",
url="http://www.ncbi.nlm.nih.gov/pubmed/31605517"
}


@Article{info:doi/10.2196/14106,
author="Pinto-Bruno, C. {\'A}ngel
and Pot, Margriet Anne
and Kleiboer, Annet
and Droes, Rose-Marie
and van Straten, Annemieke",
title="An Online Minimally Guided Intervention to Support Family and Other Unpaid Carers of People With Dementia: Protocol for a Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2019",
month="Oct",
day="10",
volume="8",
number="10",
pages="e14106",
keywords="informal carers",
keywords="dementia",
keywords="ICT intervention",
keywords="online",
keywords="perceived stress",
abstract="Background: About three-quarters of people with dementia live in their own homes, with help from family members and/or other unpaid carers, such as friends or neighbors. Often, unpaid carers themselves experience negative consequences, such as stress, burden, and symptoms of depression or anxiety. Research has shown that these consequences can be alleviated by psychosocial and psychological interventions. Moreover, there are indications that those interventions can be effective when offered online. Objective: This paper describes the protocol of a randomized controlled trial (RCT) that will take place in the Netherlands to evaluate the effectiveness of iSupport, a minimally guided, internet-based intervention to improve carers' mental health and coping resources. Methods: A superiority two-arm RCT comparing the effects of the online support program with a waiting list control condition will be carried out in the Netherlands. The iSupport intervention was developed by the World Health Organization and is based on cognitive behavioral therapy principles. It has five main themes divided into 23 lessons. Carers can pick and choose which lessons they want to complete. We aim to recruit 200 unpaid carers. The experimental group (n=100) will be provided with access to the intervention for 3 months following randomization; those in the waiting list control group (n=100) will be granted access to the intervention after 3 months. Assessments will be conducted at baseline (T0), 3 months after baseline (post intervention, T1), and 6 months after baseline (follow-up, T2). The primary outcome is perceived stress, measured by the Perceived Stress Scale. Secondary outcomes are symptoms of depression and anxiety, caregiver burden, sense of competence, self-efficacy, mastery, and carers' attitudes toward dementia and their person-centered approach (ie, to what extent carers tailor the provided care to the interest, needs, and history of the person with dementia). Results: Recruitment for the trial started in January 2019. As of July 2019, we have enrolled 120 participants. Data collection is expected to be completed by March 2020. Once all the data have been collected, we will conduct the data analyses between April and May 2020. We aim to publish our results in a manuscript by June 2020. Conclusions: Online interventions have shown promising results in improving the mental health of carers of people with dementia. Additionally, online interventions may overcome accessibility barriers. If successful, this intervention will have important potential for implementation as a public health intervention, since costs and support by trained staff are minimal. Trial Registration: Netherlands Trial Register (NTL) NL6417; https://www.trialregister.nl/trial/6417 International Registered Report Identifier (IRRID): DERR1-10.2196/14106 ",
doi="10.2196/14106",
url="http://www.researchprotocols.org/2019/10/e14106/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31603433"
}


@Article{info:doi/10.5210/ojphi.v11i2.10149,
title="Roles of Health Literacy in Relation to Social Determinants of Health and Recommendations for Informatics-Based Interventions: Systematic Review",
journal="Online J Public Health Inform",
year="2019",
volume="11",
number="2",
pages="e10149",
doi="10.5210/ojphi.v11i2.10149",
url="",
url="http://www.ncbi.nlm.nih.gov/pubmed/31632606"
}


@Article{info:doi/10.2196/12781,
author="Tsuda, Kenji
and Higuchi, Asaka
and Yokoyama, Emi
and Kosugi, Kazuhiro
and Komatsu, Tsunehiko
and Kami, Masahiro
and Tanimoto, Tetsuya",
title="Physician Decision-Making Patterns and Family Presence: Cross-Sectional Online Survey Study in Japan",
journal="Interact J Med Res",
year="2019",
month="Sep",
day="06",
volume="8",
number="3",
pages="e12781",
keywords="physician decision making",
keywords="family",
keywords="cross-sectional study",
keywords="cardiopulmonary resuscitation",
keywords="artificial ventilation",
abstract="Background: Due to a low birth rate and an aging population, Japan faces an increase in the number of elderly people without children living in single households. These elderly without a spouse and/or children encounter a lack of caregivers because most sources of care for the elderly in Japan are not provided by private agencies but by family members. However, family caregivers not only help with daily living but are also key participants in treatment decision making. The effect of family absence on treatment decision making has not been elucidated, although more elderly people will not have family members to make surrogate decisions on their behalf. Objective: The aim is to understand the influence of family absence on treatment decision making by physicians through a cross-sectional online survey with three hypothetical vignettes of patients. Methods: We conducted a cross-sectional online survey among Japanese physicians using three hypothetical vignettes. The first vignette was about a 65-year-old man with alcoholic liver cirrhosis and the second was about a 78-year-old woman with dementia, both of whom developed pneumonia with consciousness disturbance. The third vignette was about a 70-year-old woman with necrosis of her lower limb. Participants were randomly assigned to either of the two versions of the questionnaires---with family or without family---but methods were identical otherwise. Participants chose yes or no responses to questions about whether they would perform the presented medical procedures. Results: Among 1112 physicians, 454 (40.8\%) completed the survey; there were no significant differences in the baseline characteristics between groups. Significantly fewer physicians had a willingness to perform dialysis (odds ratio [OR] 0.55, 95\% CI 0.34-0.80; P=.002) and artificial ventilation (OR 0.51, 95\% CI 0.35-0.75; P<.001) for a patient from vignette 1 without family. In vignette 2, fewer physicians were willing to perform artificial ventilation (OR 0.59, 95\% CI 0.39-0.90; P=.02). In vignette 3, significantly fewer physicians showed willingness to perform wound treatment (OR 0.51, 95\% CI 0.31-0.84; P=.007), surgery (OR 0.35, 95\% CI 0.22-0.57; P<.001), blood transfusion (OR 0.45, 95\% CI 0.31-0.66; P<.001), vasopressor (OR 0.49, 95\% CI 0.34-0.72; P<.001), dialysis (OR 0.38, 95\% CI 0.24-0.59; P<.001), artificial ventilation (OR 0.25, 95\% CI 0.15-0.40; P<.001), and chest compression (OR 0.29, 95\% CI 0.18-0.47; P<.001) for a patient without family. Conclusions: Elderly patients may have treatments withheld because of the absence of family, highlighting the potential importance of advance care planning in the era of an aging society with a declining birth rate. ",
doi="10.2196/12781",
url="http://www.i-jmr.org/2019/3/e12781/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31493327"
}


@Article{info:doi/10.2196/14530,
author="Gilson, Aaron
and Dodds, Debby
and Kaur, Arveen
and Potteiger, Michael
and Ford II, H. James",
title="Using Computer Tablets to Improve Moods for Older Adults With Dementia and Interactions With Their Caregivers: Pilot Intervention Study",
journal="JMIR Form Res",
year="2019",
month="Sep",
day="03",
volume="3",
number="3",
pages="e14530",
keywords="mood change",
keywords="caregiver interactions",
keywords="older adults",
keywords="Alzheimer disease",
keywords="dementia",
keywords="computer tablets",
keywords="person-centered care",
abstract="Background: Persons living with dementia represent a significant and growing segment of the older adult (aged 65 years and older) population. They are often challenged expressively and may experience difficulties with sharing their feelings or moods. Availability of, and easy access to, tablets facilitates the use of information and communication technologies (ICTs) as a delivery mechanism for nonpharmacological interventions, especially for persons living with dementia. Evidence of the impact of ICTs in different community settings on mood with older adults and the impact of engagement on their caregivers is needed to promote broader adoption and sustainment of these technologies in the United States. Objective: This study aimed to determine the extent of the effects of tablets on positive mood change and examine the effects of study variables on care recipients' mood changes and caregivers' daily interactions. Methods: The tablet intervention was developed and evaluated in five programs. The primary outcome was caregivers' assessment of care recipients' mood (n=1089) before and after a tablet engagement session using an eight-point mood visual analog scale. Session influence on caregivers' daily activities was captured for a subsample of participants (n=542). Frequency distributions were computed for each study variables. Chi-square tests of association were calculated to determine the association of the variables on mood changes for all care recipients, as well as those being treated in skilled nursing facilities and in-home, and then for those that affected caregivers' daily activities. Results: The study sample comprised 1089 care recipient and caregiver engagement sessions. Cumulatively, 50.78\% (553/1089) of care recipients showed a transition from negative to positive moods, whereas another 41.78\% (455/1089) maintained an already-positive mood after the caregiver engagement session. Chi-square analyses demonstrated that positive mood changes resulted from using music ($\chi$210=72.9; P<.001), using YouTube as the sole app ($\chi$212=64.5; P<.001), using multiple engagement strategies ($\chi$22=42.8; P<.001), and when cared for in a skilled nursing facility ($\chi$24=236.8; P<.001) across the entire care recipient sample. In addition, although many features of the engagement session positively influenced the caregivers' day, the largest effect was observed when care recipients' mood was considered to have improved following the session ($\chi$24=234.7; P<.001). Conclusions: The study is one of the first in the United States to explore the impact of ICTs, in particular managed tablets and Web-based video services that can be used on a tablet through an app, on improving mood in persons living with dementia, and enhancing caregivers' perceptions about their care recipient interactions. Importantly, these pilot data substantiate ICTs as part of a personalized engagement approach, as beneficial alternatives to pharmaceutical interventions for mood enhancement. However, a more comprehensive study that explores the ICT's impact on additional clinical outcomes is needed to confirm these preliminary findings. ",
doi="10.2196/14530",
url="http://formative.jmir.org/2019/3/e14530/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31482847"
}


@Article{info:doi/10.2196/13280,
author="Guisado-Fernandez, Estefania
and Caulfield, Brian
and Silva, Alexandra Paula
and Mackey, Laura
and Singleton, David
and Leahy, Daniel
and Dossot, S{\'e}bastien
and Power, Dermot
and O'Shea, Diarmuid
and Blake, Catherine",
title="Development of a Caregivers' Support Platform (Connected Health Sustaining Home Stay in Dementia): Protocol for a Longitudinal Observational Mixed Methods Study",
journal="JMIR Res Protoc",
year="2019",
month="Aug",
day="28",
volume="8",
number="8",
pages="13280",
keywords="connected health",
keywords="dementia",
keywords="caregivers",
keywords="home care",
keywords="home monitoring",
abstract="Background: Dementia disease is a chronic condition that leads a person with dementia (PwD) into a state of progressive deterioration and a greater dependence in performing their activities of daily living (ADL). It is believed nowadays that PwDs and their informal caregivers can have a better life when provided with the appropriate services and support. Connected Health (CH) is a new technology-enabled model of chronic care delivery where the stakeholders are connected through a health portal, ensuring continuity and efficient flow of information. CH has demonstrated promising results regarding supporting informal home care and Aging in Place, and it has been increasingly considered by researchers and health care providers as a method for dementia home care management. Objective: This study aims to describe the development and implementation protocol of a CH platform system to support informal caregivers of PwDs at home. Methods: This is a longitudinal observational mixed methods study where quantitative and qualitative data will be combined for determining the utility of the CH platform for dementia home care. Dyads, consisting of a PwD and their informal caregiver living in the community, will be divided into 2 groups: the intervention group, which will receive the CH technology package at home, and the usual care group, which will not have any CH technology at all. Dyads will be followed up for 12 months during which they will continue with their traditional care plan, but in addition, the intervention group will receive the CH package for their use at home during 6 months (months 3 to 9 of the yearly follow-up). Further comprehensive assessments related to the caregiver's and PwD's emotional and physical well-being will be performed at the initial assessment and at 3, 6, 9, and 12 months using international and standardized validated questionnaires and semistructured individual interviews. Results: This 3-year funded study (2016-2019) is currently in its implementation phase and is expected to finish by December 2019. We believe that CH can potentially change the PwD current care model, facilitating a proactive and preventive model, utilizing self-management--based strategies, and enhancing caregivers' involvement in the management of health care at home for PwDs. Conclusions: We foresee that our CH platform will provide knowledge and promote autonomy for the caregivers, which may empower them into greater control of the care for PwDs, and with it, improve the quality of life and well-being for the person they are caring for and for themselves through a physical and cognitive decline predictive model. We also believe that facilitating information sharing between all the PwDs' care stakeholders may enable a stronger relationship between them, facilitate a more coordinated care plan, and increase the feelings of empowerment in the informal caregivers. International Registered Report Identifier (IRRID):   DERR1-10.2196/13280 ",
doi="10.2196/13280",
url="http://www.researchprotocols.org/2019/8/e13280/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31464187"
}


@Article{info:doi/10.2196/12314,
author="Giroux, Dominique
and Tremblay, M{\'e}lanie
and Latulippe, Karine
and Provencher, V{\'e}ronique
and Poulin, Val{\'e}rie
and Giguere, Anik
and Dub{\'e}, V{\'e}ronique
and S{\'e}vigny, Andr{\'e}e
and Guay, Manon
and Ethier, Sophie
and Carignan, Maude",
title="Promoting Identification and Use of Aid Resources by Caregivers of Seniors: Co-Design of an Electronic Health Tool",
journal="JMIR Aging",
year="2019",
month="Aug",
day="22",
volume="2",
number="2",
pages="e12314",
keywords="caregivers",
keywords="aged",
keywords="help-seeking behavior",
keywords="community-based participatory research",
keywords="eHealth",
keywords="telemedicine",
abstract="Background: The importance of supporting caregivers is recognized in home care for older persons, and facilitating their help-seeking process is a way to meet that need. The use of electronic health (eHealth) is a potentially promising solution to facilitate caregivers' help-seeking process. Objective: The aim of this research was to develop, in partnership with community organizations, health and social service professionals and caregivers, an eHealth tool promoting the earlier identification of needs of older persons and an optimal use of available resources. Methods: To design the tool, 8 co-design sessions (CoDs) were conducted and 3 advisory committees were created (in 11 regions) in Quebec between May 2017 and May 2018. A variety of methods were used, including the sorting method, the use of personas, eHealth tool analysis, brainstorming, sketching, prototyping, and pretesting. Results: A total of 74 co-designers (women n=64 and men n=10) were recruited to participate in the CoDs or the advisory committees. This number allowed for the identification of needs to which the tool must respond and for the identification of its requirements (functionalities and content), as well as for the development of the information architecture. Throughout the study, adjustments were made to the planning of CoD, notably because certain steps required more sessions than expected. Among others, this was true for the identification of functionalities. Conclusions: This study led to the development of an eHealth tool for caregivers of functionally dependent older persons to help them identify their needs and the resources available to meet them. International Registered Report Identifier (IRRID): RR2-10.2196/11634 ",
doi="10.2196/12314",
url="https://aging.jmir.org/2019/2/e12314/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518284"
}


@Article{info:doi/10.2196/13875,
author="Turk, Amadea
and Fairclough, Emma
and Grason Smith, Gillian
and Lond, Benjamin
and Nanton, Veronica
and Dale, Jeremy",
title="Exploring the Perceived Usefulness and Ease of Use of a Personalized Web-Based Resource (Care Companion) to Support Informal Caring: Qualitative Descriptive Study",
journal="JMIR Aging",
year="2019",
month="Aug",
day="20",
volume="2",
number="2",
pages="e13875",
keywords="caregivers",
keywords="information technology",
keywords="internet",
abstract="Background: Informal carers play an increasingly vital role in supporting the older population and the sustainability of health care systems. Care Companion is a theory-based and coproduced Web-based intervention to help support informal carers' resilience. It aims to provide personalized access to information and resources that are responsive to individuals' caring needs and responsibilities and thereby reduce the burdens associated with caregiving roles. Following the development of a prototype, it was necessary to undertake user acceptability testing to assess its suitability for wider implementation. Objective: This study aimed to undertake user acceptance testing to investigate the perceived usefulness and ease of use of Care Companion. The key objectives were to (1) explore how potential and actual users perceived its usefulness, (2) explore the barriers and facilitators to its uptake and use and (3) gather suggestions to inform plans for an area-wide implementation. Methods: We conducted user acceptance testing underpinned by principles of rapid appraisal using a qualitative descriptive approach. Focus groups, observations, and semistructured interviews were used in two phases of data collection. Participants were adult carers who were recruited through local support groups. Within the first phase, think-aloud interviews and observations were undertaken while the carers familiarized themselves with and navigated through the platform. In the second phase, focus group discussions were undertaken. Interested participants were then invited to trial Care Companion for up to 4 weeks and were followed up through semistructured telephone interviews exploring their experiences of using the platform. Thematic analysis was applied to the data, and a coding framework was developed iteratively with each phase of the study, informing subsequent phases of data collection and analysis. Results: Overall, Care Companion was perceived to be a useful tool to support caregiving activities. The key themes were related to its appearance and ease of use, the profile setup and log-in process, concerns related to the safety and confidentiality of personal information, potential barriers to use and uptake and suggestions for overcoming them, and suggestions for improving Care Companion. More specifically, these related to the need for personalized resources aimed specifically at the carers (instead of care recipients), the benefits of incorporating a Web-based journal, the importance of providing transparency about security and data usage, minimizing barriers to initial registration, offering demonstrations to support uptake by people with low technological literacy, and the need to develop a culturally sensitive approach. Conclusions: The findings identified ways of improving the ease of use and usefulness of Care Companion and demonstrated the importance of undertaking detailed user acceptance testing when developing an intervention for a diverse population, such as informal carers of older people. These findings have informed the further refinement of Care Companion and the strategy for its full implementation. ",
doi="10.2196/13875",
url="https://aging.jmir.org/2019/2/e13875",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518272"
}


@Article{info:doi/10.2196/13862,
author="Hansen, Dana
and Petrinec, Amy
and Hebeshy, Mona
and Sheehan, Denice
and Drew, L. Barbara",
title="Advancing the Science of Recruitment for Family Caregivers: Focus Group and Delphi Methods",
journal="JMIR Nursing",
year="2019",
month="Jul",
day="22",
volume="2",
number="1",
pages="e13862",
keywords="family caregivers",
keywords="recruitment",
keywords="social media",
keywords="illness stories",
abstract="Background: Successful recruitment of participants is imperative to a rigorous study, and recruitment challenges are not new to researchers. Many researchers have used social media successfully to recruit study participants. However, challenges remain for effective online social media recruitment for some populations. Objective: Using a multistep approach that included a focus group and Delphi method, researchers performed this study to gain expert advice regarding material development for social media recruitment and to test the recruitment material with the target population. Methods: In the first phase, we conducted a focus group with 5 social media experts to identify critical elements for effective social media recruitment material. Utilizing the Delphi method with 5 family caregivers, we conducted the second phase to reach consensus regarding effective recruitment videos. Results: Phase I utilized a focus group that resulted in identification of three barriers related to social media recruitment, including lack of staff and resources, issues with restrictive algorithms, and not standing out in the crowd. Phase II used the Delphi method. At the completion of Delphi Round 1, 5 Delphi participants received a summary of the analysis for feedback and agreement with our summary. Using data and recommendations from Round 1, researchers created two new recruitment videos with additions to improve trustworthiness and transparency, such as the university's logo. In Round 2 of the Delphi method, consensus regarding the quality and trustworthiness of the recruitment videos reached 100\%. Conclusions: One of the primary challenges for family caregiver research is recruitment. Despite the broad adoption of social media marketing approaches, the effectiveness of online recruitment strategies needs further investigation. ",
doi="10.2196/13862",
url="https://nursing.jmir.org/2019/1/e13862/",
url="http://www.ncbi.nlm.nih.gov/pubmed/34345769"
}


@Article{info:doi/10.2196/13521,
author="Allemann, Hanna
and Thyl{\'e}n, Ingela
and {\AA}gren, Susanna
and Liljeroos, Maria
and Str{\"o}mberg, Anna",
title="Perceptions of Information and Communication Technology as Support for Family Members of Persons With Heart Failure: Qualitative Study",
journal="J Med Internet Res",
year="2019",
month="Jul",
day="16",
volume="21",
number="7",
pages="e13521",
keywords="family",
keywords="caregivers",
keywords="telemedicine",
keywords="perception",
keywords="heart failure",
keywords="social support",
keywords="focus groups",
keywords="qualitative research",
abstract="Background: Heart failure (HF) affects not only the person diagnosed with the syndrome but also family members, who often have the role of informal carers. The needs of these carers are not always met, and information and communications technology (ICT) could have the potential to support them in their everyday life. However, knowledge is lacking about how family members perceive ICT and see opportunities for this technology to support them. Objective: The aim of this study was to explore the perceptions of ICT solutions as supportive aids among family members of persons with HF. Methods: A qualitative design was applied. A total of 8 focus groups, comprising 23 family members of persons affected by HF, were conducted between March 2015 and January 2017. Participants were recruited from 1 hospital in Sweden. A purposeful sampling strategy was used to find family members of persons with symptomatic HF from diverse backgrounds. Data were analyzed using qualitative content analysis. Results: The analysis revealed 4 categories and 9 subcategories. The first category, about how ICT could provide relevant support, included descriptions of how ICT could be used for communication with health care personnel, for information and communication retrieval, plus opportunities to interact with persons in similar life situations and to share support with peers and extended family. The second category, about how ICT could provide access, entailed how ICT could offer solutions not bound by time or place and how it could be both timely and adaptable to different life situations. ICT could also provide an arena for family members to which they might not otherwise have had access. The third category concerned how ICT could be too impersonal and how it could entail limited personal interaction and individualization, which could lead to concerns about usability. It was emphasized that ICT could not replace physical meetings. The fourth category considered how ICT could be out of scope, reflecting the fact that some family members were generally uninterested in ICT and had difficulties envisioning how it could be used for support. It was also discussed as more of a solution for the future. Conclusions: Family members described multiple uses for ICT and agreed that ICT could provide access to relevant sources of information from which family members could potentially exchange support. ICT was also considered to have its limitations and was out of scope for some but with expected use in the future. Even though some family members seemed hesitant about ICT solutions in general, this might not mean they are unreceptive to suggestions about their usage in, for example, health care. Thus, a variety of factors should be considered to facilitate future implementations of ICT tools in clinical practice. ",
doi="10.2196/13521",
url="http://www.jmir.org/2019/7/e13521/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31313662"
}


@Article{info:doi/10.2196/10876,
author="Spencer, Lucy
and Potterton, Rachel
and Allen, Karina
and Musiat, Peter
and Schmidt, Ulrike",
title="Internet-Based Interventions for Carers of Individuals With Psychiatric Disorders, Neurological Disorders, or Brain Injuries: Systematic Review",
journal="J Med Internet Res",
year="2019",
month="Jul",
day="09",
volume="21",
number="7",
pages="e10876",
keywords="internet",
keywords="carers",
keywords="mental health",
keywords="technology",
keywords="review",
abstract="Background: Nonprofessional carers who provide support to an individual with a psychiatric or neurological disorder will often themselves experience symptoms of stress, anxiety, or low mood, and they perceive that they receive little support. Internet-based interventions have previously been found to be effective in the prevention and treatment of a range of mental health difficulties in carers. Objective: This review seeks to establish the status of internet-based interventions for informal (nonprofessional) carers of people with psychiatric or neurological disorders by investigating (1) the number and quality of studies evaluating the efficacy or effectiveness of internet-based carer interventions and (2) the impact that such interventions have on carer mental health, as well as (3) how internet-based interventions compare with other intervention types (eg, face-to-face treatment). Methods: A systematic literature search was conducted in January 2019 using the EMBASE (1974-present), Ovid MEDLINE (1946-present), PsychARTICLES, PsychINFO (1806-present), and Global Health (1973-present) databases, via the Ovid Technologies database. Search terms included carer, caregiver, online, technology, internet-based, internet, interactive, intervention, and evaluation. Studies selected for inclusion in this review met the following predetermined criteria: (1) delivering an intervention aimed primarily at informal carers, (2) carers supporting individuals with psychiatric disorders, stroke, dementia, or brain injury, (3) the intervention delivered to the carers was primarily internet based, (4) the study reported a pre- and postquantitative measure of carer depression, anxiety, stress, burden, or quality of life, (5) appeared in a peer-reviewed journal, and (6) was accessible in English. Results: A total of 46 studies were identified for inclusion through the detailed search strategy. The search was conducted, and data were extracted independently by 2 researchers. The majority of studies reported that 1 or more measures relating to carer mental health improved following receipt of a relevant intervention, with interventions for carers of people with traumatic brain injury showing a consistent link with improved outcomes. Conclusions: Studies investigating internet-based interventions for carers of individuals with diverse psychiatric or neurological difficulties show some evidence in support of the effectiveness of these interventions. In addition, such interventions are acceptable to carers. Available evidence is of varying quality, and more high-quality trials are needed. Further research should also establish how specific intervention components, such as structure or interactivity, contribute to their overall efficacy with regard to carer mental health. ",
doi="10.2196/10876",
url="https://www.jmir.org/2019/7/e10876/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31290399"
}


@Article{info:doi/10.2196/13360,
author="Rockwood, Kenneth
and Sanon Aigbogun, Myrlene
and Stanley, Justin
and Wong, Helen
and Dunn, Taylor
and Chapman, T. Ch{\`e}re A.
and Howlett, E. Susan
and Miguelez, Maia
and McGarrigle, Lisa
and Baker, A. Ross",
title="The Symptoms Targeted for Monitoring in a Web-Based Tracking Tool by Caregivers of People With Dementia and Agitation: Cross-Sectional Study",
journal="J Med Internet Res",
year="2019",
month="Jun",
day="28",
volume="21",
number="6",
pages="e13360",
keywords="Alzheimer disease",
keywords="dementia",
keywords="agitation",
keywords="neuropsychiatric symptoms",
keywords="internet",
keywords="caregiver",
abstract="Background: In people with dementia, neuropsychiatric symptoms (NPSs), especially agitation, are associated with worse quality of life and caregiver burden. As NPSs may vary with illness severity, knowledge of how people with dementia and their caregivers describe and rate the importance of agitation symptoms can improve the understanding of the clinical meaningfulness of the manifestations of agitation. The internet provides new opportunities to better understand patient experiences, as patients and caregivers increasingly look to Web-based platforms as a means of managing symptoms. Objective: The aim of this study was to examine Web-based reports from a dementia symptom website to better understand the symptoms of agitation and explore how they are being targeted for monitoring by caregivers of people with dementia. Methods: The Dementia Guide website hosts a Web-based database used by caregivers (97\%) and people with dementia (3\%). From its 61 dementia symptoms, users can select relevant symptoms that they deem important to monitor or track the effects of treatment. We employed a staging algorithm to determine if individuals had mild cognitive impairment (MCI) or mild, moderate, or severe dementia. Agitation was defined using terms consistent with the International Psychogeriatrics Association's provisional consensus definition. We compared the proportion of people with NPSs and agitation across stages of dementia severity and studied how many agitation-defining descriptors were selected, and how often they occurred, by stage. Results: As of March 2017, 4121 people had used the tracking tool, of whom 2577 provided sufficient data to allow disease severity staging. NPSs were tracked by 2127/2577 (82.54\%) and agitation by 1898/2577 (73.65\%). The proportion in whom agitation was tracked increased with increasing cognitive impairment: 68.5\% (491/717) in people with MCI, and 72.50\% (754/1040), 73.3\% (378/516), and 90.5\% (275/304) in mild, moderate, and severe dementia, respectively ($\chi$23=54.9; P<.001). The number of NPS and agitation descriptors selected also increased with severity (median number of NPSs=1, 2, 2, and 3 for MCI, mild, moderate, and severe dementia, respectively, Kruskal-Wallis H Test H3=250.47; P<.001; median number of agitation descriptors=1, 2, 3, and 4, H3=146.11; P<.001). Conclusions: NPSs and agitation are common targets for tracking over the course of dementia and appear more frequently with increasing disease severity. These common and distressing symptoms represent clinically meaningful targets in treating people with dementia. ",
doi="10.2196/13360",
url="https://www.jmir.org/2019/6/e13360/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31254339"
}


@Article{info:doi/10.2196/13711,
author="Anderberg, Peter
and Barnestein-Fonseca, Pilar
and Guzman-Parra, Jose
and Garolera, Maite
and Quintana, Mar{\'i}a
and Mayoral-Cleries, Fermin
and Lemmens, Evi
and Sanmartin Berglund, Johan",
title="The Effects of the Digital Platform Support Monitoring and Reminder Technology for Mild Dementia (SMART4MD) for People With Mild Cognitive Impairment and Their Informal Carers: Protocol for a Pilot Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2019",
month="Jun",
day="21",
volume="8",
number="6",
pages="e13711",
keywords="dementia",
keywords="mild cognitive impairment",
keywords="tablet",
keywords="app",
keywords="carer",
keywords="eHealth",
keywords="mHealth",
abstract="Background: Many countries are witnessing a trend of growth in the number and proportion of older adults within the total population. In Europe, population aging has had and will continue to have major social and economic consequences. This is a fundamentally positive development where the added life span is of great benefit for both the individual and the society. Yet, the risk for the individual to contract noncommunicable diseases and disability increases with age. This may adversely affect the individual's ability to live his or her life in the way that is desired. Cognitive conditions constitute a group of chronic diseases that predominantly affects older people. Recent technology advancements can help support the day-to-day living activities at home for people with cognitive impairments. Objective: A digital platform (Support Monitoring and Reminder for Mild Dementia; SMART4MD) is created to improve or maintain the quality of life for people with mild cognitive impairment (PwMCI) and their carers. The platform will provide reminders, information, and memory support in everyday life, with the purpose of giving structure and lowering stress. In the trial, we will include participants with a diagnosed neurocognitive disorder as well as persons with an undiagnosed subjective memory problem and cognitive impairment, that is, 20 to 28 points on the Mini-Mental State Examination. Methods: A pragmatic, multicenter RCT is being conducted in Spain, Sweden, and Belgium. The targets for recruitment are 1200 dyads---split into an intervention group and a control group that are in usual care. Intervention group participants will be provided with a data-enabled computer tablet with the SMART4MD app. Its core functionalities, intended to be used daily at home, are based on reminders, cognitive supporting activities, and sharing health information. Results: Inclusion of participants started in December 2017, and recruitment is expected to end in February 2019. Furthermore, there will be 3 follow-up visits at 6, 12, and 18 months after the baseline visit. Conclusions: This RCT is expected to offer benefits at several levels including in-depth knowledge of the possibilities of introducing a holistic multilayered information and communication technology solution for this group. SMART4MD has been developed in a process involving the structured participation of PwMCI, their informal carers, and clinicians. The adoption of SMART4MD faces the challenge of this age group's relative unfamiliarity with digital devices and services. However, this challenge can also be an opportunity for developing a digital device tailored to a group at risk of digital exclusion. This research responds to the wider call for the development of digital devices which are accessible and affordable to older people and this full scale RCT can hopefully serve as a model for further studies in this field. Trial Registration: ClinicalTrials.gov NCT03325699; https://clinicaltrials.gov/ct2/show/NCT03325699 International Registered Report Identifier (IRRID): DERR1-10.2196/13711 ",
doi="10.2196/13711",
url="http://www.researchprotocols.org/2019/6/e13711/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31228177"
}


@Article{info:doi/10.2196/12327,
author="Tremblay, M{\'e}lanie
and Latulippe, Karine
and Giguere, MC Anik
and Provencher, V{\'e}ronique
and Poulin, Val{\'e}rie
and Dub{\'e}, V{\'e}ronique
and Guay, Manon
and Ethier, Sophie
and S{\'e}vigny, Andr{\'e}e
and Carignan, Maude
and Giroux, Dominique",
title="Requirements for an Electronic Health Tool to Support the Process of Help Seeking by Caregivers of Functionally Impaired Older Adults: Co-Design Approach",
journal="JMIR Aging",
year="2019",
month="Jun",
day="07",
volume="2",
number="1",
pages="e12327",
keywords="functionally-impaired elderly",
keywords="caregivers",
keywords="co-design",
keywords="eHealth",
keywords="telemedicine",
keywords="help-seeking behavior",
abstract="Background: In Quebec, Canada, many public, community, and private organizations provide resources to caregivers of functionally impaired older adults. Nevertheless, these resources may be difficult for caregivers to find. A co-design study was conducted to address the gap between caregivers and access to resources. The purpose of this study was to support the process of help seeking by caregivers of functionally impaired older adults through electronic health (eHealth). Objective: The purpose of this study was to focus on the identification of functional and content requirements for an eHealth tool to support the help-seeking process of caregivers of functionally impaired older adults. Methods: This study uses a co-design process based on qualitative action research approach to develop an eHealth tool with health and social service professionals (HSSPs), community workers, and caregivers. The participants acted as co-designers in identifying requirements for the tool. A total of 4 design workshops and 1 advisory committee session were held in different locations in Quebec, Canada. Activities were videotaped and analyzed with a conceptual framework of user experience. Results: A total of 11 caregivers, 16 community workers, and 11 HSSPs participated in identifying the requirements for the eHealth tool. Several functional and content requirements were identified for each user need (19). Content requirements differed depending on the category of participant, corresponding to the concept of user segmentation in the design of information and communication technology. Nevertheless, there were disagreements among co-designers about specific functionalities, which included (1) functionalities related to the social Web, (2) functionalities related to the evaluation of resources for caregivers, and (3) functionalities related to the emerging technologies. Several co-design sessions were required to resolve disagreements. Conclusions: Co-designers (participants) were able to identify functional and content requirements for each of the previously identified needs; however, several discussions were required to achieve consensus. Decision making was influenced by identity, social context, and participants' knowledge, and it is a challenge to reconcile the different perspectives. The findings stressed the importance of allowing more time to deal with the iterative aspect of the design activity, especially during the identification of requirements of an eHealth tool. International Registered Report Identifier (IRRID): RR2-10.2196/11634 ",
doi="10.2196/12327",
url="http://aging.jmir.org/2019/1/e12327/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518279"
}


@Article{info:doi/10.2196/13713,
author="Portz, Dickman Jennifer
and Fruhauf, Christine
and Bull, Sheana
and Boxer, S. Rebecca
and Bekelman, B. David
and Casillas, Alejandra
and Gleason, Kathy
and Bayliss, A. Elizabeth",
title="``Call a Teenager\ldots That's What I Do!'' - Grandchildren Help Older Adults Use New Technologies: Qualitative Study",
journal="JMIR Aging",
year="2019",
month="Jun",
day="06",
volume="2",
number="1",
pages="e13713",
keywords="health technology",
keywords="eHealth",
keywords="family research",
keywords="social support",
abstract="Background: Although family technical support seems intuitive, there is very little research exploring this topic. Objective: The objective of this study was to conduct a subanalysis of data collected from a large-scale qualitative project regarding older adults' experiences in using health information technology. Specifically, the subanalysis explored older adults' experiences with technology support from family members to inform strategies for promoting older adults' engagement with new health technologies. Although the primary analysis of the original study was theoretically driven, this paper reports results from an inductive, open-coding analysis. Methods: This is a subanalysis of a major code identified unexpectedly from a qualitative study investigating older adults' use experience of a widespread health technology, the patient portal. A total of 24 older patients (?65 years) with multiple chronic conditions (Charlson Comorbidity Index >2) participated in focus groups conducted at the patients' primary clinic. While conducting the primary theoretically driven analysis, coders utilized an open-coding approach to ensure important ideas not reflected in the theoretical code book were captured. Open coding resulted in 1 code: family support. This subanalysis further categorized family support by who provided tech support, how tech support was offered, and the opinions of older participants about receiving family tech support. Results: The participants were not specifically asked about family support, yet themes around family assistance and encouragement for technology emerged from every focus group. Participants repeatedly mentioned that they called their grandchildren and adult children if they needed help with technology. Participants also reported that family members experienced difficulty when teaching technology use. Family members struggled to explain simple technology tasks and were frustrated by the slow teaching process. Conclusions: The results suggest that older adults ask their family members, particularly grandchildren, to support them in the use of new technologies. However, family may experience difficulties in providing this support. Older adults will be increasingly expected to use health technologies, and family members may help with tech support. Providers and health systems should consider potential family support and engagement strategies to foster adoption and use among older patients. ",
doi="10.2196/13713",
url="http://aging.jmir.org/2019/1/e13713/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518274"
}


@Article{info:doi/10.2196/13599,
author="Lindauer, Allison
and McKenzie, Glenise
and LaFazia, David
and McNeill, Loriann
and Mincks, Kate
and Spoden, Natasha
and Myers, Marcella
and Mattek, Nora
and Teri, L. Linda",
title="Using Technology to Facilitate Fidelity Assessments: The Tele-STAR Caregiver Intervention",
journal="J Med Internet Res",
year="2019",
month="May",
day="24",
volume="21",
number="5",
pages="e13599",
keywords="dementia",
keywords="caregiving",
keywords="fidelity",
abstract="Background: Families living with Alzheimer disease and related dementias have more access to support thanks to the development of effective telehealth-based programs. However, as technological science grows, so does the risk that these technology-based interventions will diverge from foundational protocols, diluting their efficacy. Strategies that ensure programs are delivered as intended, with fidelity to guiding protocols, are needed across the intervention spectrum---from development to wide-scale implementation. Few papers address fidelity in their technology-based work. Here, we present our translated telehealth intervention, Tele-STAR, with our fidelity findings. Objective: This study aimed to assess the preliminary efficacy of Tele-STAR on reducing family caregiver burden and depression. Across the implementation phases, we assessed the fidelity of a caregiver education intervention, STAR-C, as it was translated into a telehealth option (Tele-STAR). Methods: A total of 13 family caregivers consented to participate in an 8-week, videoconference-based intervention (Tele-STAR). Tele-STAR efficacy in reducing the affective burden of caregiving was assessed using pre- and postintervention paired t tests. Content experts assessed program fidelity by reviewing and rating Tele-STAR materials for adherence to the original STAR-C protocol. These experts assessed treatment fidelity by viewing videos of the intervention and rating adherence on a checklist. Results: Tele-STAR reduced caregiver burden and retained good program and treatment fidelity to STAR-C. Conclusions: We found Tele-STAR reduced caregiver burden and had good fidelity to the original protocol. Assessing fidelity is a complex process that requires incorporation of these procedures early in the research process. The technology used in this study facilitated the accrual of informative data about the fidelity of our translated intervention, Tele-STAR. ",
doi="10.2196/13599",
url="http://www.jmir.org/2019/5/e13599/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31127721"
}


@Article{info:doi/10.2196/12271,
author="Latulippe, Karine
and Tremblay, M{\'e}lanie
and Poulin, Val{\'e}rie
and Provencher, V{\'e}ronique
and Giguere, MC Anik
and S{\'e}vigny, Andr{\'e}e
and Dub{\'e}, V{\'e}ronique
and {\'E}thier, Sophie
and Guay, Manon
and Carignan, Maude
and Giroux, Dominique",
title="Prioritizing the Needs of Caregivers of Older Adults to Support Their Help-Seeking Process as a First Step to Developing an eHealth Tool: The Technique for Research of Information by Animation of a Group of Experts (TRIAGE) Method",
journal="JMIR Aging",
year="2019",
month="May",
day="23",
volume="2",
number="1",
pages="e12271",
keywords="caregivers",
keywords="aged",
keywords="help seeking behavior",
keywords="community-based participatory research",
keywords="eHealth",
keywords="telemedicine",
abstract="Background: Caregivers of functionally dependent older persons sometimes seek formal services to support their relatives. However, this process of help-seeking is complex. Objective: The overall aim of the study was to use a co-design approach to develop an electronic health (eHealth) tool to support caregivers in their process of help-seeking. This study presents the first step of the design phase, which aimed to prioritize the user needs to be considered during the development of an eHealth tool. Methods: A total of 3 groups of caregivers, community workers, and health and social service professionals participated in either a co-design session (1 or 2) or an advisory committee in 2 rural areas and 1 urban area. The needs identified in the academic literature and during a previous study were sorted (Technique for Research of Information by Animation of a Group of Experts [TRIAGE] method) by the participants (referred to in this study as co-designers) to obtain a consensus on those to be prioritized. Needs identified, grouped, and removed were ranked and compared. Results: Of the initial list of 32 needs, 12 were modified or merged, 3 added, and 7 deleted as the co-designers felt that the needs were poorly formulated, redundant, irrelevant, or impossible to meet. In the end, 19 needs were identified for the design of the eHealth tool. Conclusions: Many of the identified needs are informational (eg, having access to up-to-date information) and are probably met by existing tools. However, many others are emotional (eg, being encouraged to use the services) and offer an interesting challenge to eHealth tool development. International Registered Report Identifier (IRRID): RR2-10.2196/11634 ",
doi="10.2196/12271",
url="http://aging.jmir.org/2019/1/e12271/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518269"
}


@Article{info:doi/10.2196/13415,
author="Zhao, Yinan
and Feng, Hui
and Hu, Mingyue
and Hu, Hengyu
and Li, Hui
and Ning, Hongting
and Chen, Huijing
and Liao, Lulu
and Peng, Linlin",
title="Web-Based Interventions to Improve Mental Health in Home Caregivers of People With Dementia: Meta-Analysis",
journal="J Med Internet Res",
year="2019",
month="May",
day="6",
volume="21",
number="5",
pages="e13415",
keywords="internet",
keywords="education",
keywords="mental health",
keywords="caregivers",
keywords="dementia",
abstract="Background: Dementia is a major cause of disability and dependency in older adults worldwide. It is often accompanied by general psychological distress, such as depression and anxiety symptoms, among caregivers of people with dementia (PwD). The physical and mental health of the caregiver is a prerequisite and a promise to help PwD continue to live as long and as well as possible. Web-based interventions can provide convenient and efficient support and an education tool to potentially reduce the negative outcomes associated with providing care. Objective: The aim of this study was to examine the effect of internet-based interventions on the mental health outcomes of family caregivers of PwD and to explore which components of the Web-based interventions play an important role. Methods: A comprehensive literature search was conducted in PubMed, Excerpta Medica dataBASE, PsycINFO, Cochrane Database, and the Cumulative Index to Nursing and Allied Health Literature using relevant terms such as Web-based and caregiver as keywords, covering all studies published before June 2018. A total of 2 reviewers independently reviewed all published abstracts, according to established inclusion and exclusion criteria. We extracted information about the participants, interventions, and results and reviewed article quality in terms of the randomized trial methods, using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Results: A total of 815 caregivers participated in 6 studies, with 4 of the studies using depression as an outcome. The analysis found that depression scores dropped an average of 0.23 (95\% CI ?0.38 to ?0.07; P<.01) after Web-based interventions. In 2 studies of caregivers who were experiencing anxiety symptoms, the average score for anxiety dropped by 0.32 points (95\% CI ?0.50 to ?0.14; P<.01). However, in terms of coping, pain, and stress, the Web-based interventions showed a poor effect. On the whole, the addition of professional psychological support on the basis of education can improve caregivers' mental health. Conclusions: Internet-based interventions were generally effective at reducing anxiety and depression in dementia caregivers, although negative results were found in some studies. As for burden and stress, further research is required. ",
doi="10.2196/13415",
url="http://www.jmir.org/2019/5/e13415/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31066680"
}


@Article{info:doi/10.2196/12192,
author="Guisado-Fern{\'a}ndez, Estefan{\'i}a
and Giunti, Guido
and Mackey, M. Laura
and Blake, Catherine
and Caulfield, Michael Brian",
title="Factors Influencing the Adoption of Smart Health Technologies for People With Dementia and Their Informal Caregivers: Scoping Review and Design Framework",
journal="JMIR Aging",
year="2019",
month="Apr",
day="30",
volume="2",
number="1",
pages="e12192",
keywords="dementia",
keywords="informal caregiver",
keywords="smart health technologies",
keywords="user-centered design",
keywords="technology adoption",
abstract="Background: Smart Health technologies (s-Health technologies) are being developed to support people with dementia (PwD) and their informal caregivers at home, to improve care and reduce the levels of burden and stress they experience. However, although s-Health technologies have the potential to facilitate this, the factors influencing a successful implementation in this population are still unknown. Objective: The aim of this study was to review existing literature to explore the factors influencing PwD and their informal caregivers' adoption of s-Health technologies for home care. Methods: Following the Arksey and O'Malley methodology, this study is a scoping review providing a narrative description of the scientific literature on factors influencing s-Health technology adoption for PwD and their informal caregivers. A search was conducted using PubMed, the Cochrane library, the IEEE library, and Scopus. Publications screening was conducted by 2 researchers based on inclusion criteria, and full-text analysis was then conducted by 1 researcher. The included articles were thematically analyzed by 2 researchers to gain an insight into factors influencing adoption that PwD and their informal caregivers have to encounter when using s-Health technologies. Relevant information was identified and coded. Codes were later discussed between the researchers for developing and modifying them and for achieving a consensus, and the researchers organized the codes into broader themes. Results: Emerging themes were built in a way that said something specific and meaningful about the research question, creating a list of factors influencing the adoption of s-Health technologies for PwD and their informal caregivers, including attitudinal aspects, ethical issues, technology-related challenges, condition-related challenges, and identified gaps. A design framework was created as a guide for future research and innovation in the area of s-Health technologies for PwD and their informal caregivers: DemDesCon for s-Health Technologies. DemDesCon for s-Health Technologies addresses 4 domains to consider for the design and development of s-Health technologies for this population: cognitive decline domain, physical decline domain, social domain, and development domain. Conclusions: Although s-Health technologies have been used in health care scenarios, more work is needed for them to fully achieve their potential for use in dementia care. Researchers, businesses, and public governments need to collaborate to design and implement effective technology solutions for PwD and their informal caregivers, but the lack of clear design guidelines seems to be slowing the process. We believe that the DemDesCon framework will provide them with the guidance and assistance needed for creating meaningful devices for PwD home care and informal caregivers, filling a much-needed space in the present knowledge gap. ",
doi="10.2196/12192",
url="http://aging.jmir.org/2019/1/e12192/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518262"
}


@Article{info:doi/10.2196/12647,
author="Marshall, Skye
and van der Meij, S. Barbara
and Milte, Rachel
and Collins, E. Clare
and de van der Schueren, AE Marian
and Banbury, Mark
and Warner, M. Molly
and Isenring, Elizabeth",
title="Family in Rehabilitation, Empowering Carers for Improved Malnutrition Outcomes: Protocol for the FREER Pilot Study",
journal="JMIR Res Protoc",
year="2019",
month="Apr",
day="30",
volume="8",
number="4",
pages="e12647",
keywords="carers",
keywords="protein-energy malnutrition",
keywords="telehealth",
keywords="intervention",
keywords="pilot study",
keywords="older adults",
keywords="subacute",
keywords="rehabilitation",
keywords="aged",
abstract="Background: Interventions to improve the nutritional status of older adults and the integration of formal and family care systems are critical research areas to improve the independence and health of aging communities and are particularly relevant in the rehabilitation setting. Objective: The primary outcome aimed to determine if the FREER (Family in Rehabilitation: EmpowERing Carers for improved malnutrition outcomes) intervention in malnourished older adults during and postrehabilitation improve nutritional status, physical function, quality of life, service satisfaction, and hospital and aged care admission rates up to 3 months postdischarge, compared with usual care. Secondary outcomes evaluated include family carer burden, carer services satisfaction, and patient and carer experiences. This pilot study will also assess feasibility and intervention fidelity to inform a larger randomized controlled trial. Methods: This protocol is for a mixed-methods two-arm historically-controlled prospective pilot study intervention. The historical control group has 30 participants, and the pilot intervention group aims to recruit 30 patient-carer pairs. The FREER intervention delivers nutrition counseling during rehabilitation, 3 months of postdischarge telehealth follow-up, and provides supportive resources using a novel model of patient-centered and carer-centered nutrition care. The primary outcome is nutritional status measured by the Scored Patient-Generated Subjective Global Assessment Score. Qualitative outcomes such as experiences and perceptions of value will be measured using semistructured interviews followed by thematic analysis. The process evaluation addresses intervention fidelity and feasibility. Results: Recruitment commenced on July 4, 2018, and is ongoing with eight patient-carer pairs recruited at the time of manuscript submission. Conclusions: This research will inform a larger randomized controlled trial, with potential for translation to health service policies and new models of dietetic care to support the optimization of nutritional status across a continuum of nutrition care from rehabilitation to home. Trial Registration: Australian New Zealand Clinical Trials Registry Number (ACTRN) 12618000338268; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=374608\&isReview=true (Archived by WebCite at http://www.webcitation.org/74gtZplU2). International Registered Report Identifier (IRRID): DERR1-10.2196/12647 ",
doi="10.2196/12647",
url="https://www.researchprotocols.org/2019/4/e12647/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31038466"
}


@Article{info:doi/10.2196/11634,
author="Latulippe, Karine
and Guay, Manon
and {\'E}thier, Sophie
and S{\'e}vigny, Andr{\'e}e
and Dub{\'e}, V{\'e}ronique
and Provencher, V{\'e}ronique
and Poulin, Val{\'e}rie
and Giguere, MC Anick
and Tremblay, M{\'e}lanie
and Carignan, Maude
and Giroux, Dominique",
title="Supporting the Process of Help-Seeking by Caregivers of Functionally Dependent Older Persons Through Electronic Health: Protocol for a Multicenter Co-Design",
journal="JMIR Res Protoc",
year="2019",
month="Apr",
day="26",
volume="8",
number="4",
pages="e11634",
keywords="caregivers",
keywords="aged",
keywords="help-seeking behavior, community-based participatory research",
keywords="eHealth",
keywords="telemedicine",
abstract="Background: It is often only when the initial signs of exhaustion appear that caregivers first may engage in help-seeking behavior, but it is difficult for them to know which is the most appropriate formal service in their situation. Electronic health (eHealth) can support caregivers in keeping the older person they are caring for at home, but few eHealth tools designed for supporting the process of help-seeking by caregivers of functionally impaired older persons have been developed using a co-design approach. Objective: This paper aims to describe the protocol of a project that tries to assist caregivers to target their needs and those of the older person they support early in their help-seeking process, and guide them effectively to the formal service most appropriate for their situation. This project aims to answer the following questions: (1) What type of tool can better support caregivers to identify their needs and those of the older person they are caring for and then refer them to an appropriate formal service? and (2) What information should be found in such a tool? Methods: This study presents a description of the process of an ongoing multicenter research project based on a co-design approach, which includes 3 phases (1) identification of caregivers' needs in terms of tools to support their help-seeking behavior, (2) development of a tool, and (3) evaluation of its usability. Results: The project began in January 2016 with the ethics application for the 3 phases of the project. For phase 1, recruitment began in December 2016 and ended in September 2017. Phase 2 began in the spring of 2017 and ended in June 2018. All the co-design sessions have been completed. Phase 3 of the project will begin in September 2018. Conclusions: Although there are some challenges associated with this type of methodology, the methodology still remains relevant, as it involves future users in the development of a tool, which increases the chances that the tool will meet the users' needs. International Registered Report Identifier (IRRID): DERR1-10.2196/11634 ",
doi="10.2196/11634",
url="http://www.researchprotocols.org/2019/4/e11634/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31025956"
}


@Article{info:doi/10.2196/12850,
author="Sikder, Taher Abu
and Yang, Cheng Francis
and Schafer, Rhiana
and Dowling, A. Glenna
and Traeger, Lara
and Jain, Ananda Felipe",
title="Mentalizing Imagery Therapy Mobile App to Enhance the Mood of Family Dementia Caregivers: Feasibility and Limited Efficacy Testing",
journal="JMIR Aging",
year="2019",
month="Mar",
day="21",
volume="2",
number="1",
pages="e12850",
keywords="family caregivers",
keywords="mindfulness",
keywords="depression",
keywords="mobile apps",
keywords="psychotherapy",
abstract="Background: Family caregivers of patients with Alzheimer disease and related dementias (AD and ADRD) often experience high stress and are at high risk for depression. Technologically delivered therapy is attractive for AD and ADRD caregivers because of the time demands associated with in-person participation. Objective: We aimed to study the feasibility and conduct limited efficacy testing of a mobile app intervention delivering mentalizing imagery therapy (MIT) for family caregivers. Methods: A 4-week trial of the MIT app for family AD and ADRD caregivers was conducted to assess the feasibility of use and investigate changes in depression symptoms, mood, and caregiving experience. Semistructured interviews were conducted to characterize participants' perceived feasibility and benefits. Results: A total of 17 of the 21 (80\%) consented participants (mean age 67 years, range 54-79) utilized the app at least once and were further analyzed. Average usage of audio recordings was on 14 (SD 10) days out of 28 possible and comprised 29 (SD 28) individual sessions. There were improvements in depression with a large effect size for those who used the app at least moderately (P=.008), increases in positive mood postintervention (P<.05), and acute increases in mood following daily guided imagery practice (Stretching and Breathing, P<.001; Eye in the Center, P<.001; Nesting Doll, P=.002; Situation Solver, P=.003; and Life Globe, P=.006). Semistructured interviews revealed perceived benefits such as greater ability to remain ``centered'' despite caregiving challenges and positive reframing of the caregiver experience. Conclusions: App delivery of MIT is feasible for family AD and ADRD caregivers, including aging seniors. Results showed moderate to high usage of the app for a majority of users. Limited efficacy testing provides justification for studying the MIT app for AD and ADRD caregivers to improve mood and reduce depression in larger, controlled trials. ",
doi="10.2196/12850",
url="http://aging.jmir.org/2019/1/e12850/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518275"
}


@Article{info:doi/10.2196/11827,
author="Wasilewski, B. Marina
and Nonoyama, Mika
and Dale, Craig
and McKim, A. Douglas
and Road, Jeremy
and Leasa, David
and Goldstein, Roger
and Rose, Louise",
title="Development of a Web-Based Peer Support Program for Family Caregivers of Ventilator-Assisted Individuals Living in the Community: Protocol for a Pilot Randomized Controlled Trial",
journal="JMIR Res Protoc",
year="2019",
month="Feb",
day="06",
volume="8",
number="2",
pages="e11827",
keywords="intervention",
keywords="caregivers",
keywords="peer support",
keywords="mechanical ventilation",
abstract="Background: Across Europe, Canada, Australia, and the United States, the prevalence of home mechanical ventilation (HMV) prevalence is 6.6-12.9 per 100,000. At-home ventilator-assisted individuals (VAIs) are often vulnerable and highly comorbid, requiring complex care. In Canada, most VAI care is provided by family, leading to poor health-related quality of life and increased caregiver burden. No supportive interventions or peer support programs are tailored to VAI caregivers. Owing to the financial, geographic, and time limitations, Web-based support delivery may especially meet VAI family caregiver needs. We have developed a peer mentor training and Web-based peer support program for VAI caregivers including information-sharing, peer-to-peer communication, and peer mentorship. Objective: Study Stage 1 aims to (1) evaluate the face and content validity of the peer mentor training program and (2) investigate participant satisfaction. Study Stage 2 aims to evaluate (1) the feasibility of participant recruitment and Web-based program delivery; (2) acceptability, usability, and satisfactoriness; (3) experiences of caregivers and peer mentors with the Web-based peer support program; and (4) effect of the Web-based peer support program on caregiver health outcomes. Methods: Study Stage 1: We will train 7 caregivers to act as peer mentors for the Web-based peer support program trial; they will complete questionnaires rating the utility of individual training sessions and the training program overall. Study Stage 2: We will recruit 30 caregiver peers for a pilot randomized controlled trial of the 12-week Web-based peer support program using a waitlist control; the program includes private chat, a public discussion forum, and weekly moderated chats. Caregiver peers will be randomized to the intervention or waitlist control group using a 1:1 ratio using Randomize.net. Both groups will complete pre- and postintervention health outcome questionnaires (ie, caregiving impact, mastery, coping, personal gain, positive affect, and depression). Caregiver peers in the intervention arm will only complete a program evaluation and will be invited to participate in an interview to provide insight into their experience. Peer mentors will be invited to participate in a Web-based focus group to provide insight into their experience as mentors. We will judge the feasibility per the number of recruitment and program delivery goals met, use analysis of covariance to compare health outcomes between intervention and control groups, and analyze qualitative data thematically. Results: Peer mentor training was completed with 5 caregivers in July 2018. To date, 2 caregivers have beta-tested the website, and the Web-based peer support program trial will commence in September 2018. Results are expected by early 2019. Conclusions: This study will result in the production and initial evaluation of a rigorously developed, evidence- and stakeholder-informed Web-based peer training and peer support program for caregivers of VAIs residing at home. International Registered Report Identifier (IRRID): PRR1-10.2196/11827 ",
doi="10.2196/11827",
url="http://www.researchprotocols.org/2019/2/e11827/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30724737"
}


@Article{info:doi/10.2196/10952,
author="van den Kieboom, CP Robin
and Bongers, MB Inge
and Mark, E. Ruth
and Snaphaan, JAE Liselore",
title="User-Driven Living Lab for Assistive Technology to Support People With Dementia Living at Home: Protocol for Developing Co-Creation--Based Innovations",
journal="JMIR Res Protoc",
year="2019",
month="Jan",
day="28",
volume="8",
number="1",
pages="e10952",
keywords="dementia",
keywords="family caregivers",
keywords="longitudinal studies",
keywords="technology",
abstract="Background: Owing to no cure for dementia currently, there is an urgent need to look for alternative ways to support these people and their informal caregivers. Carefully designed interventions can answer the unmet needs of both people with dementia and their informal caregivers in the community. However, existing products, systems, and services are often too complex or unsuitable. Objective: This study aims to identify, longitudinally, the changing needs (as dementia progresses) of people with dementia living at home and their informal caregivers. By developing co-creation-based innovations, these changing needs will hopefully be met. Methods: A user-driven Living Lab design is used to structurally explore the needs over time of people with dementia (and their informal caregivers) living in the community in the North Brabant region of the Netherlands. In addition, co-creation-based innovations will be developed, tested, and evaluated by these people and their caregivers at home. All participants will complete complaints-oriented questionnaires at 3 time-points---at the baseline, 1 year, and 2 years after they start participating. Home interviews are scheduled to explore if and how these complaints translate into participants' specific needs or wishes. Focus groups meet on a monthly basis to further identify the needs of people with dementia and their informal caregivers and provide feedback to the stakeholders. In the context field, participants have an opportunity to actually test the products at home and provide feedback. Quantitative outcome measurements include neuropsychiatric symptoms, cognitive decline, independence in activities of daily living, safety, and caregiver burden. Qualitative outcome measurements include feedback to the stakeholders regarding the needs of people with dementia and their informal caregivers and how these needs change over time, as well as user experiences about the specific innovations. Results: Participant recruitment will start in September 2018 and is ongoing. The first results of data analyses are expected in the spring of 2019. Conclusions: The overall aim of Innovate Dementia 2.0 is to facilitate person-centered innovations developed for people with dementia and their informal caregivers at all stages as dementia progresses. This should lead to newly designed concepts and innovations, which are better able to answer the needs of people with dementia and their caregivers in the community. International Registered Report Identifier (IRRID): DERR1-10.2196/10952 ",
doi="10.2196/10952",
url="http://www.researchprotocols.org/2019/1/e10952/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30688653"
}


@Article{info:doi/10.2196/11237,
author="Bangerter, R. Lauren
and Griffin, Joan
and Harden, Kristin
and Rutten, J. Lila",
title="Health Information--Seeking Behaviors of Family Caregivers: Analysis of the Health Information National Trends Survey",
journal="JMIR Aging",
year="2019",
month="Jan",
day="14",
volume="2",
number="1",
pages="e11237",
keywords="disparities",
keywords="family caregivers",
keywords="Health Information National Trends Survey",
keywords="internet use",
keywords="mobile phone",
abstract="Background: The growing population of aging adults relies on informal caregivers to help meet their health care needs, get help with decision making, and gather health information. Objective: The objective of this study was to examine health information--seeking behaviors among caregivers and to identify caregiver characteristics that contribute to difficulty in seeking health information. Methods: Data from the Health Information National Trends Survey 5, Cycle 1 (N=3181) were used to compare health information seeking of caregivers (n=391) with noncaregivers (n=2790). Results: Caregivers sought health information for themselves and others using computers, smartphones, or other electronic means more frequently than noncaregivers. Caregivers born outside of the United States reported greater difficulty seeking health information (beta=.42; P=.02). Nonwhite caregivers (beta =?.33; P=.03), those with less education (beta =?.35; P=.02), those with private insurance (beta =?.37; P=.01), and those without a regular health care provider (beta =?.35; P=.01) had less confidence seeking health information. Caregivers with higher income had more confidence (beta =.12; P?.001) seeking health information. Conclusions: This study highlights the prevalence of electronic means to find health information among caregivers. Notable differences in difficulty and confidence in health information seeking exist between caregivers, indicating the need for more attention to the socioeconomic status and caregivers born outside of the United States. Findings can guide efforts to optimize caregivers' health information--seeking experiences. ",
doi="10.2196/11237",
url="https://aging.jmir.org/2019/1/e11237/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518309"
}


@Article{info:doi/10.2196/11051,
author="Shaffer, M. Kelly
and Chow, I. Philip
and Cohn, F. Wendy
and Ingersoll, S. Karen
and Ritterband, M. Lee",
title="Informal Caregivers' Use of Internet-Based Health Resources: An Analysis of the Health Information National Trends Survey",
journal="JMIR Aging",
year="2018",
month="Dec",
day="18",
volume="1",
number="2",
pages="e11051",
keywords="caregivers",
keywords="health education",
keywords="internet",
keywords="information dissemination",
keywords="mobile phone",
keywords="uncompensated care",
abstract="Background: Informal caregivers express strong interest in technology innovations to help them in their caregiving role; however, divides across sociodemographic characteristics in internet and technology access may preclude the most vulnerable caregivers from accessing such resources. Objective: This study aims to examine caregivers' internet use, both generally and for seeking health-related information, and whether usage differs as a function of caregivers' characteristics. Methods: Data were analyzed from the Health Information National Trends Survey 5 Cycle 1. Participants were included in analyses if they self-identified as providing uncompensated care to a close individual. Caregivers reported internet use factors, age, education, rurality, general health, distress, and objective caregiving burden. We used chi-square tests of independence with jackknife variance estimation to compare whether internet use factors differed by caregivers' characteristics. Results: A total of 77.5\% (303/391) caregivers surveyed reported ever using the internet. Of internet users, 88.1\% (267/303) accessed from a home computer and 83.2\% (252/303) from a mobile device. Most caregivers accessed health information for themselves (286/391, 73.1\%) or others (264/391, 67.5\%); fewer communicated with a doctor over the Web (148/391, 37.9\%) or had a wellness app (171/391, 43.7\%). Caregivers reporting younger age, more education, and good health were more likely to endorse any of these activities. Furthermore, two-thirds of caregivers (258/391, 66.0\%) endorsed trust in health information from the internet. Conclusions: Computers and mobile devices are practical platforms for disseminating caregiving-related information and supportive services to informal caregivers; these modalities may, however, have a more limited reach to caregivers who are older, have less education, and are in poorer health. ",
doi="10.2196/11051",
url="http://aging.jmir.org/2018/2/e11051/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518244"
}


@Article{info:doi/10.2196/12274,
author="Wozney, Lori
and Freitas de Souza, M. Luciane
and Kervin, Emily
and Queluz, Francine
and McGrath, J. Patrick
and Keefe, Janice",
title="Commercially Available Mobile Apps for Caregivers of People With Alzheimer Disease or Other Related Dementias: Systematic Search",
journal="JMIR Aging",
year="2018",
month="Dec",
day="07",
volume="1",
number="2",
pages="e12274",
keywords="alzheimer and other related dementias",
keywords="apps",
keywords="caregivers",
keywords="eHealth",
keywords="mobile phone",
abstract="Background: More than 15 million Americans provide unpaid care for persons with Alzheimer disease or other related dementias (ADRD). While there is good evidence to suggest that caregivers benefit from psychosocial interventions, these have primarily been delivered via face-to-face individual or group format. Alternatively, offering electronic health (eHealth) interventions may assist caregivers in providing quality care while remaining in good health. Research to date has generated little knowledge about what app features support ADRD caregivers' behavioral changes and how developers might optimize features over the long term. Objective: There is an evident knowledge gap in the current landscape of commercially available apps, their integration of behavioral techniques, content focus, and compliance with usability recommendations. This paper systematically reviews and inventories the apps caregivers might typically be exposed to and determines the support integrated into the apps and their functionality for older adults. Methods: The search strategy was designed to mimic typical Web-based health information-seeking behavior for adults. Apps were included based on their explicit focus on ADRD caregiver knowledge and skill improvement. Two coders with expertise in behavioral interventions and eHealth pilot-tested the data extraction. One coder retained app characteristics and design features. Techniques used to promote change were determined, and 2 questions from the Mobile App Rating Scale were used to assess the app credibility and evidence base. Content topics were evaluated using a thematic framing technique, and each app was assessed using a usability heuristic checklist. Results: The search results generated 18 unique apps that met the inclusion criteria. Some apps were unavailable, and only 8 unique apps were reviewed. Of the 8, 7 (88\%) apps did not state which scientific orientation was followed to develop their content. None of the apps made clinical claims of improving caregivers' and care recipients' overall health. All apps relied on textual information to disseminate their contents. None of the apps was trialed and evidence based. Apps included on average 7 out of 10 behavioral change techniques, 5 out of 10 C.A.R.E. (Caregivers, Aspirations, Realities, and Expectations) features, and 10 out of 18 features on the usability heuristics checklist. Conclusions: Our findings suggest that caregivers are likely to discover apps that are not actually accessible and have low or no evidence base. Apps were found to be largely static, text-based informational resources, and few supported behaviors needed to maintain caregivers' health. While apps may be providing a high volume of information, caregivers must still navigate what resources they need with limited guidance. Finally, the commercial marketplace is addressing some of the major usability elements, but many design elements are not addressed. ",
doi="10.2196/12274",
url="http://aging.jmir.org/2018/2/e12274/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518255"
}


@Article{info:doi/10.2196/10697,
author="Breebaart, Hanneke
and Broese van Groenou, Marjolein",
title="A Groupware Tool to Facilitate Caregiving for Home-Dwelling Frail Older Persons in the Netherlands: Mixed-Methods Study",
journal="JMIR Aging",
year="2018",
month="Dec",
day="07",
volume="1",
number="2",
pages="e10697",
keywords="devices",
keywords="kinship networks",
keywords="long-term care",
keywords="home care organization",
keywords="communication",
keywords="health",
keywords="elderly",
keywords="digital care network",
keywords="digital networked communication",
abstract="Background: Collaboration among informal and formal caregivers in a mixed care network of home-dwelling elderly may benefit from using a groupware app for digital networked communication (DNC). Objective: This study aimed to describe and explain differences in the use and evaluation of a DNC app by members of the care network and to come up with a list of conditions that facilitate (or restrict) the implementation of a DNC app by a home care organization. Methods: A pilot study collected information on digital communication in 7 care networks of clients of a home care organization in the Netherlands. Semistructured interviews with 4 care recipients, 7 informal carers (of which 3 spoke on behalf of the care receiver as well on account of receivers' suffering from dementia), 3 district nurses, 5 auxiliary nurses, and 3 managers were conducted 3 times in a period of 6 months. In addition, we observed relevant workshops initiated by the home care organization and studied log-in data created by the users of the DNC app. Results: The qualitative data and the monthly retrieved quantitative log-in data revealed 3 types of digital care networks: arranging the care network, discuss the care network, and staying connected network. Differences between network types were attributed to health impairment and digital illiteracy of the care recipients, motivation of informal caregivers, and commitment of formal caregivers. The easy availability of up-to-date information, the ability to promote a sense of safety for the carers, and short communication lines in case of complex care situations were positively evaluated. Conclusions: It is concluded that digital communication is beneficial for organizing and discussing the care within a care network. More research is needed to study its impact on care burden of informal carers, on quality of care, and on quality of life of home-dwelling frail older adults. ",
doi="10.2196/10697",
url="http://aging.jmir.org/2018/2/e10697/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518286"
}


@Article{info:doi/10.2196/11054,
author="Vos, Jolien
and Gerling, Kathrin
and Linehan, Conor
and Siriwardena, N. Aloysius
and Windle, Karen",
title="Understanding Care Navigation by Older Adults With Multimorbidity: Mixed-Methods Study Using Social Network and Framework Analyses",
journal="JMIR Aging",
year="2018",
month="Nov",
day="14",
volume="1",
number="2",
pages="e11054",
keywords="care navigation",
keywords="long-term conditions",
keywords="multimorbidity",
keywords="older adults",
keywords="social network analysis",
abstract="Background: Health and social care systems were designed to be used primarily by people with single and acute diseases. However, a growing number of older adults are diagnosed with multiple long-term conditions (LTCs). The process of navigating the intricacies of health and social care systems to receive appropriate care presents significant challenges for older people living with multiple LTCs, which in turn can negatively influence their well-being and quality of life. Objective: The long-term goal of this work is to design technology to assist people with LTCs in navigating health and social care systems. To do so, we must first understand how older people living with LTCs currently engage with and navigate their care networks. No published research describes and analyses the structure of formal and informal care networks of older adults with multiple LTCs, the frequency of interactions with each type of care service, and the problems that typically arise in these interactions. Methods: We conducted a mixed-methods study and recruited 62 participants aged ?55 years who were living in England, had ?2 LTCs, and had completed a social network analysis questionnaire. Semistructured interviews were conducted with roughly a 10\% subsample of the questionnaire sample: 4 women and 3 men. On average, interviewees aged 70 years and had 4 LTCs. Results: Personal care networks were complex and adapted to each individual. The task of building and subsequently navigating one's personal care network rested mainly on patients' shoulders. It was frequently the patients' task to bridge and connect the different parts of the system. The major factor leading to a satisfying navigation experience was found to be patients' assertive, determined, and proactive approaches. Furthermore, smooth communication and interaction between different parts of the care system led to more satisfying navigation experiences. Conclusions: Technology to support care navigation for older adults with multiple LTCs needs to support patients in managing complex health and social care systems by effectively integrating the management of multiple conditions and facilitating communication among multiple stakeholders, while also offering flexibility to adapt to individual situations. Quality of care seems to be dependent on the determination and ability of patients. Those with less determination and fewer organization skills experience worse care. Thus, technology must aim to fulfill these coordination functions to ensure care is equitable across those who need it. ",
doi="10.2196/11054",
url="http://aging.jmir.org/2018/2/e11054/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518236"
}


@Article{info:doi/10.2196/10524,
author="Latulipe, Celine
and Quandt, A. Sara
and Melius, Altizer Kathryn
and Bertoni, Alain
and Miller Jr, P. David
and Smith, Douglas
and Arcury, A. Thomas",
title="Insights Into Older Adult Patient Concerns Around the Caregiver Proxy Portal Use: Qualitative Interview Study",
journal="J Med Internet Res",
year="2018",
month="Nov",
day="02",
volume="20",
number="11",
pages="e10524",
keywords="caregivers",
keywords="patient portals",
keywords="proxy",
keywords="proxy portal access",
keywords="proxy portal accounts",
abstract="Background: Electronic patient portals have become common and offer many potential benefits for patients' self-management of health care. These benefits could be especially important for older adult patients dealing with significant chronic illness, many of whom have caregivers, such as a spouse, adult child, or other family member or friend, who help with health care management. Patient portals commonly contain large amounts of personal information, including diagnoses, health histories, medications, specialist appointments, lab results, and billing and insurance information. Some health care systems provide proxy accounts for caregivers to access a portal on behalf of a patient. It is not well known how much and in what way caregivers are using patient portals on behalf of patients and whether patients see any information disclosure risks associated with such access. Objective: The objective of this study was to examine how older adult patients perceive the benefits and risks of proxy patient portal access by their caregivers. Methods: We conducted semistructured interviews with 10 older adult patients with chronic illness. We asked them about their relationship with their caregivers, their use of their patient portal, their caregiver's use of the portal, and their perceptions about the benefits and risks of their caregiver's use of the portals. We also asked them about their comfort level with caregivers having access to information about a hypothetical diagnosis of a stigmatized condition. Two investigators conducted a thematic analysis of the qualitative data. Results: All patients identified caregivers. Some had given caregivers access to their portals, in all cases by sharing log-in credentials, rather than by setting up an official proxy account. Patients generally saw benefits in their caregivers having access to the information and functions provided by the portal. Patients generally reported that they would be uncomfortable with caregivers learning of stigmatized conditions and also with caregivers (except spouses) accessing financial billing information. Conclusions: Patients share their electronic patient portal credentials with caregivers to receive the benefits of those caregivers having access to important medical information but are unaware of all the information those caregivers can access. Better portal design could alleviate these unwanted information disclosures. ",
doi="10.2196/10524",
url="https://www.jmir.org/2018/11/e10524/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30389654"
}


@Article{info:doi/10.2196/10296,
author="Loh, Poh Kah
and Ramsdale, Erika
and Culakova, Eva
and Mendler, H. Jason
and Liesveld, L. Jane
and O'Dwyer, M. Kristen
and McHugh, Colin
and Gilles, Maxence
and Lloyd, Terri
and Goodman, Molly
and Klepin, D. Heidi
and Mustian, M. Karen
and Schnall, Rebecca
and Mohile, G. Supriya",
title="Novel mHealth App to Deliver Geriatric Assessment-Driven Interventions for Older Adults With Cancer: Pilot Feasibility and Usability Study",
journal="JMIR Cancer",
year="2018",
month="Oct",
day="29",
volume="4",
number="2",
pages="e10296",
keywords="Mobile health application",
keywords="geriatric assessment",
keywords="older adults",
keywords="cancer",
abstract="Background: Older patients with cancer are at an increased risk of adverse outcomes. A geriatric assessment (GA) is a compilation of reliable and validated tools to assess domains that are predictors of morbidity and mortality, and it can be used to guide interventions. However, the implementation of GA and GA-driven interventions is low due to resource and time limitations. GA-driven interventions delivered through a mobile app may support the complex needs of older patients with cancer and their caregivers. Objective: We aimed to evaluate the feasibility and usability of a novel app (TouchStream) and to identify barriers to its use. As an exploratory aim, we gathered preliminary data on symptom burden, health care utilization, and satisfaction. Methods: In a single-site pilot study, we included patients aged ?65 years undergoing treatment for systemic cancer and their caregivers. TouchStream consists of a mobile app and a Web portal. Patients underwent a GA at baseline with the study team (on paper), and the results were used to guide interventions delivered through the app. A tablet preloaded with the app was provided for use at home for 4 weeks. Feasibility metrics included usability (system usability scale of >68 is considered above average), recruitment, retention (number of subjects consented who completed postintervention assessments), and percentage of days subjects used the app. For the last 8 patients, we assessed their symptom burden (severity and interference with 17-items scored from 0-10 where a higher score indicates worse symptoms) using a clinical symptom inventory, health care utilization from the electronic medical records, and satisfaction (6 items scored on a 5-point Likert Scale for both patients and caregivers where a higher score indicates higher satisfaction) using a modified satisfaction survey. Barriers to use were elicited through interviews. Results: A total of 18 patients (mean age 76.8, range 68-87) and 13 caregivers (mean age 69.8, range 38-81) completed the baseline assessment. Recruitment and retention rates were 67\% and 80\%, respectively. The mean SUS score was 74.0 for patients and 72.2 for caregivers. Mean percentage of days the TouchStream app was used was 78.7\%. Mean symptom severity and interference scores were 1.6 and 2.8 at preintervention, and 0.9 and 1.5 at postintervention, respectively. There was a total of 27 clinic calls during the intervention period and 15 during the postintervention period (week 5-8). One patient was hospitalized during the intervention period (week 1-4) and two patients during the postintervention period (week 5-8). Mean satisfaction scores of patients and caregivers with the mobile app were 20.4 and 23.4, respectively. Barriers fell into 3 themes: general experience, design, and functionality. Conclusions: TouchStream is feasible and usable for older patients on cancer treatment and their caregivers. Future studies should evaluate the effects of the TouchStream on symptoms and health care utilization in a randomized fashion. ",
doi="10.2196/10296",
url="http://cancer.jmir.org/2018/2/e10296/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30373733"
}


@Article{info:doi/10.2196/jmir.9895,
author="Vaughan, Christine
and Trail, E. Thomas
and Mahmud, Ammarah
and Dellva, Stephanie
and Tanielian, Terri
and Friedman, Esther",
title="Informal Caregivers' Experiences and Perceptions of a Web-Based Peer Support Network: Mixed-Methods Study",
journal="J Med Internet Res",
year="2018",
month="Aug",
day="28",
volume="20",
number="8",
pages="e257",
keywords="caregivers",
keywords="social support",
keywords="social isolation",
keywords="biomedical technology",
keywords="military family",
abstract="Background: Web-based peer support interventions have shown promise in reducing social isolation and social support deficits among informal caregivers, but little research has examined how caregivers use and perceive these interventions. Objective: In this study, we examined utilization and perceptions of a Web-based social support intervention for informal caregivers of wounded, ill, and injured United States military service members and veterans. Methods: This was a mixed-methods study that used quantitative survey data and qualitative data from focus groups and interviews with informal caregivers enrolled in a Web-based peer support intervention to explore their use and perceptions of the intervention. The intervention was delivered via a website that featured interest groups organized around specific topics, webinars, webchats, and messaging functionality and was moderated by professionally trained peers. This study occurred in the context of a quasi-experimental outcome evaluation of the intervention, where intervention participants were compared with a group of military caregivers who were not enrolled in the intervention. Results: Survey findings indicated that caregivers used the website infrequently, with 60.7\% (128/211) visiting the website once a month or less, and passively, with a minority (32/144, 22.2\%) of users (ie, those who had visited the website at least once during the past 3 months, N=144) posting comments or links to the network. Nonetheless, most users (121/144, 84.0\%) endorsed moderate or greater satisfaction with the website on the survey, and focus group and interview participants reported benefiting sufficiently from passive use of the website (eg, reading posts). Quantitative and qualitative findings suggested that users viewed the website primarily as a source of informational support. Among 63.2\% (91/144) of users who completed the survey, the most commonly reported network-related activity was obtaining information from the network's resource library, and focus group and interview participants viewed the network primarily as an informational resource. Focus group and interview participants expressed an unmet need for emotional support and the desire for a more personal touch in the forms of more active engagement with other caregivers in the network and the creation of local, in-person support groups for caregivers. Conclusions: These findings suggest that Web-based peer support interventions may lend themselves better to the provision of informational (vs emotional) support and may need to be supplemented by in-person peer support groups to better meet caregivers' needs for emotional support. ",
doi="10.2196/jmir.9895",
url="http://www.jmir.org/2018/8/e257/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30154074"
}


@Article{info:doi/10.2196/mhealth.9345,
author="Grossman, R. Molli
and Zak, Kim Deanah
and Zelinski, M. Elizabeth",
title="Mobile Apps for Caregivers of Older Adults: Quantitative Content Analysis",
journal="JMIR Mhealth Uhealth",
year="2018",
month="Jul",
day="30",
volume="6",
number="7",
pages="e162",
keywords="mobile apps",
keywords="aged",
keywords="elderly",
keywords="caregivers",
keywords="family caregivers",
keywords="carers",
keywords="adult children",
keywords="quality of life",
keywords="dementia",
abstract="Background: Informal caregivers of older adults provide critical support for their loved ones but are subject to negative health outcomes because of burden and stress. Interventions to provide information and resources as well as social and emotional support reduce burden. Mobile apps featuring access to information, assistance with scheduling, and other features can automate support functions inexpensively and conveniently and reach a greater proportion of caregivers than otherwise possible. Objective: The aim of this study was to identify mobile apps geared towards caregivers of older adults, catalog features, and suggest best practices for adoption based on empirical findings of beneficial interventions in the caregiving literature. Methods: Search for apps focused on ones catered for caregivers of older adults in Google Play and iTunes, compiling their features, and identifying features reflecting categories of support identified in successful intervention studies to negative caregiver outcomes. Intervention research indicates that provision of information and resources, assistance in practical problem solving, coordinating care among multiple caregivers, and emotional support reduce caregiver burden. Results: Despite approximately over 200,000 mobile health--related apps, the availability of mobile apps for caregivers is relatively sparse (n=44 apps) as of October 2017. Apps generally addressed specific categories of support, including information and resources, family communication, and caregiver-recipient interactions. Few apps were comprehensive. Only 8 out of 44 (18\%) had features that addressed three or more categories. Few apps provided specific stress reduction exercises for caregivers, which is important for reducing burden. Conclusions: Mobile apps have the potential to provide resources, just?-in?-time information for problem-solving, and stress reduction strategies for caregivers. Many apps offer functions that have been shown to reduce burden and improve health outcomes in caregivers, but few provide emotional support. Using an evidence?-based practice approach, mobile apps for caregivers can provide multiple beneficial support functions. Apps can serve a much larger proportion of this highly underserved population in their mobile form than more traditional means, improving their health and quality of life. ",
doi="10.2196/mhealth.9345",
url="http://mhealth.jmir.org/2018/7/e162/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30061093"
}


@Article{info:doi/10.2196/10017,
author="Boots, MM Lizzy
and de Vugt, E. Marjolein
and Kempen, IJM Gertrudis
and Verhey, RJ Frans",
title="Effectiveness of a Blended Care Self-Management Program for Caregivers of People With Early-Stage Dementia (Partner in Balance): Randomized Controlled Trial",
journal="J Med Internet Res",
year="2018",
month="Jul",
day="13",
volume="20",
number="7",
pages="e10017",
keywords="internet",
keywords="caregivers",
keywords="technology",
keywords="therapeutics",
abstract="Background: The benefits of electronic health support for dementia caregivers are increasingly recognized. Reaching caregivers of people with early-stage dementia could prevent high levels of burden and psychological problems in the later stages. Objective: The current study evaluates the effectiveness of the blended care self-management program, Partner in Balance, compared to a control group. Methods: A single-blind randomized controlled trial with 81 family caregivers of community-dwelling people with mild dementia was conducted. Participants were randomly assigned to either the 8-week, blended care self-management Partner in Balance program (N=41) or a waiting-list control group (N=40) receiving usual care (low-frequent counseling). The program combines face-to-face coaching with tailored Web-based modules. Data were collected at baseline and after 8 weeks in writing by an independent research assistant who was blinded to the treatment. The primary proximal outcome was self-efficacy (Caregiver Self-Efficacy Scale) and the primary distal outcome was symptoms of depression (Center for Epidemiological Studies Depression Scale). Secondary outcomes included mastery (Pearlin Mastery Scale), quality of life (Investigation Choice Experiments for the Preferences of Older People), and psychological complaints (Hospital Anxiety and Depression Scale-Anxiety and Perceived Stress Scale). Results: A significant increase in favor of the intervention group was demonstrated for self-efficacy (care management, P=.002; service use P=.001), mastery (P=.001), and quality of life (P=.032). Effect sizes were medium for quality of life (d=0.58) and high for self-efficacy care management and service use (d=0.85 and d=0.93, respectively) and mastery (d=0.94). No significant differences between the groups were found on depressive symptoms, anxiety, and perceived stress. Conclusions: This study evaluated the first blended-care intervention for caregivers of people with early-stage dementia and demonstrated a significant improvement in self-efficacy, mastery, and quality of life after receiving the Partner in Balance intervention, compared to a waiting-list control group receiving care as usual. Contrary to our expectations, the intervention did not decrease symptoms of depression, anxiety, or perceived stress. However, the levels of psychological complaints were relatively low in the study sample. Future studies including long-term follow up could clarify if an increase in self-efficacy results in a decrease or prevention of increased stress and depression. To conclude, the program can provide accessible preventative care to future generations of caregivers of people with early-stage dementia. Trial Registration: Netherlands Trial Register NTR4748; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4748 (Archived by WebCite at http://www.webcitation.org/6vSb2t9Mg) ",
doi="10.2196/10017",
url="http://www.jmir.org/2018/7/e10017/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30006327"
}


@Article{info:doi/10.2196/10668,
author="Sherifali, Diana
and Ali, Usman Muhammad
and Ploeg, Jenny
and Markle-Reid, Maureen
and Valaitis, Ruta
and Bartholomew, Amy
and Fitzpatrick-Lewis, Donna
and McAiney, Carrie",
title="Impact of Internet-Based Interventions on Caregiver Mental Health: Systematic Review and Meta-Analysis",
journal="J Med Internet Res",
year="2018",
month="Jul",
day="03",
volume="20",
number="7",
pages="e10668",
keywords="internet",
keywords="support",
keywords="education",
keywords="mental health",
keywords="caregivers",
keywords="chronic conditions",
abstract="Background: The health of informal caregivers of adults with chronic conditions is increasingly vital since caregivers comprise a large proportion of supportive care to family members living in the community. Due to efficiency and reach, internet-based interventions for informal caregivers have the potential to mitigate the negative mental health outcomes associated with caregiving. Objective: The objective of this systematic review and meta-analysis was to examine the impact of internet-based interventions on caregiver mental health outcomes and the impact of different types of internet-based intervention programs. Methods: MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane, and AgeLine databases were searched for randomized controlled trials or controlled clinical trials published from January 1995 to April 2017 that compared internet-based intervention programs with no or minimal internet-based interventions for caregivers of adults with at least 1 chronic condition. The inclusion criteria were studies that included (1) adult informal caregivers (aged 18 years or older) of adults living in the community with a chronic condition; (2) an internet-based intervention program to deliver education, support, or monitoring to informal caregivers; and (3) outcomes of mental health. Title and abstract and full-text screening were completed in duplicate. Data were extracted by a single reviewer and verified by a second reviewer, and risk of bias assessments were completed accordingly. Where possible, data for mental health outcomes were meta-analyzed. Results: The search yielded 7923 unique citations of which 290 studies were screened at full-text. Of those, 13 studies met the inclusion criteria; 11 were randomized controlled trials, 1 study was a controlled clinical trial, and 1 study comprised both study designs. Beneficial effects of any internet-based intervention program resulted in a mean decrease of 0.48 points (95\% CI --0.75 to --0.22) for stress and distress and a mean decrease of 0.40 points (95\% CI --0.58 to --0.22) for anxiety among caregivers. For studies that examined internet-based information and education plus professional psychosocial support, the meta-analysis results showed small to medium beneficial effect sizes of the intervention for the mental health outcomes of depression (--0.34; 95\% CI --0.63 to --0.05) and anxiety (--0.36; 95\% CI --0.66 to --0.07). Some suggestion of a beneficial effect on overall health for the use of information and education plus combined peer and professional support was also shown (1.25; 95\% CI 0.24 to 2.25). Overall, many studies were of poor quality and were rated at high risk of bias. Conclusions: The review found evidence for the benefit of internet-based intervention programs on mental health for caregivers of adults living with a chronic condition, particularly for the outcomes of caregiver depression, stress and distress, and anxiety. The types of interventions that predominated as efficacious included information and education with or without professional psychological support, and, to a lesser extent, with combined peer and psychological support. Further high-quality research is needed to inform the effectiveness of interactive, dynamic, and multicomponent internet-based interventions. Trial Registration: PROSPERO CRD42017075436; https://www.crd.york.ac.uk/prospero/display\_record.php?RecordID=75436 (Archived by WebCite at http://www.webcitation.org/709M3tDvn) ",
doi="10.2196/10668",
url="http://www.jmir.org/2018/7/e10668/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29970358"
}


@Article{info:doi/10.2196/jmir.9548,
author="Hopwood, Jenny
and Walker, Nina
and McDonagh, Lorraine
and Rait, Greta
and Walters, Kate
and Iliffe, Stephen
and Ross, Jamie
and Davies, Nathan",
title="Internet-Based Interventions Aimed at Supporting Family Caregivers of People With Dementia: Systematic Review",
journal="J Med Internet Res",
year="2018",
month="Jun",
day="12",
volume="20",
number="6",
pages="e216",
keywords="dementia",
keywords="caregivers",
keywords="internet",
keywords="review",
abstract="Background: Caring for someone with dementia is one of the most challenging caring roles. The need for support for family caregivers has been recognized for some time but is often still lacking. With an aging population, demand on health and social care services is growing, and the population is increasingly looking to the internet for information and support. Objective: In this review, we aimed to (1) identify the key components of existing internet-based interventions designed to support family caregivers of people with dementia, (2) develop an understanding of which components are most valued by caregivers, and (3) consider the evidence of effectiveness of internet-based interventions designed to support family caregivers of people with dementia. Methods: We conducted a systematic search of online databases in April 2018. We searched reference lists and tracked citations. All study designs were included. We adopted a narrative synthesis approach with thematic analysis and tabulation as tools. Results: We identified 2325 studies, of which we included 40. The interventions varied in the number and types of components, duration and dose, and outcomes used to measure effectiveness. The interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. The overall quality of the studies was low, making interpretation and generalizability of the effectiveness findings difficult. However, most studies suggested that interventions may be beneficial to family caregiver well-being, including positive impacts on depression, anxiety, and burden. Particular benefit came from psychological support provided online, where several small randomized controlled trials suggested improvements in caregiver mental health. Provision of information online was most beneficial when tailored specifically for the individual and used as part of a multicomponent intervention. Peer support provided in online groups was appreciated by most participants and showed positive effects on stress. Finally, online contact with a professional was appreciated by caregivers, who valued easy access to personalized practical advice and emotional support, leading to a reduction in burden and strain. Conclusions: Although mixed, the results indicate a positive response for the use of internet-based interventions by caregivers. More high-quality studies are required to identify the effectiveness of internet interventions aimed at supporting family caregivers, with particular focus on meeting the needs of caregivers during the different stages of dementia. ",
doi="10.2196/jmir.9548",
url="http://www.jmir.org/2018/6/e216/",
url="http://www.ncbi.nlm.nih.gov/pubmed/29895512"
}


@Article{info:doi/10.2196/10741,
author="Elers, Phoebe
and Hunter, Inga
and Whiddett, Dick
and Lockhart, Caroline
and Guesgen, Hans
and Singh, Amardeep",
title="User Requirements for Technology to Assist Aging in Place: Qualitative Study of Older People and Their Informal Support Networks",
journal="JMIR Mhealth Uhealth",
year="2018",
month="Jun",
day="06",
volume="6",
number="6",
pages="e10741",
keywords="aging in place",
keywords="informal support",
keywords="smart home",
keywords="home monitoring technology",
abstract="Background: Informal support is essential for enabling many older people to age in place. However, there is limited research examining the information needs of older adults' informal support networks and how these could be met through home monitoring and information and communication technologies. Objective: The purpose of this study was to investigate how technologies that connect older adults to their informal and formal support networks could assist aging in place and enhance older adults' health and well-being. Methods: Semistructured interviews were conducted with 10 older adults and a total of 31 members of their self-identified informal support networks. They were asked questions about their information needs and how technology could support the older adults to age in place. The interviews were transcribed and thematically analyzed. Results: The analysis identified three overarching themes: (1) the social enablers theme, which outlined how timing, informal support networks, and safety concerns assist the older adults' uptake of technology, (2) the technology concerns theme, which outlined concerns about cost, usability, information security and privacy, and technology superseding face-to-face contact, and (3) the information desired theme, which outlined what information should be collected and transferred and who should make decisions about this. Conclusions: Older adults and their informal support networks may be receptive to technology that monitors older adults within the home if it enables aging in place for longer. However, cost, privacy, security, and usability barriers would need to be considered and the system should be individualizable to older adults' changing needs. The user requirements identified from this study and described in this paper have informed the development of a technology that is currently being prototyped. ",
doi="10.2196/10741",
url="http://mhealth.jmir.org/2018/6/e10741/"
}


@Article{info:doi/10.2196/aging.8475,
author="Ploeg, Jenny
and McAiney, Carrie
and Duggleby, Wendy
and Chambers, Tracey
and Lam, Annie
and Peacock, Shelley
and Fisher, Kathryn
and Forbes, Anne Dorothy
and Ghosh, Sunita
and Markle-Reid, Maureen
and Triscott, Jean
and Williams, Allison",
title="A Web-Based Intervention to Help Caregivers of Older Adults With Dementia and Multiple Chronic Conditions: Qualitative Study",
journal="JMIR Aging",
year="2018",
month="Apr",
day="23",
volume="1",
number="1",
pages="e2",
keywords="Internet",
keywords="Web-based interventions",
keywords="qualitative research",
keywords="caregivers",
keywords="aged",
keywords="dementia",
keywords="multiple chronic conditions",
abstract="Background: Caregivers (ie, family members and friends) play a vital role in the ongoing care and well-being of community-living older persons with Alzheimer disease and related dementia in combination with multiple chronic conditions. However, they often do so to the detriment of their own physical, mental, and emotional health. Caregivers often experience multiple challenges in their caregiving roles and responsibilities. Recent evidence suggests that Web-based interventions have the potential to support caregivers by decreasing caregiver stress and burden. However, we know little about how Web-based supports help caregivers. Objective: The objectives of this paper were to describe (1) how the use of a self-administered, psychosocial, supportive, Web-based Transition Toolkit, My Tools 4 Care (MT4C), designed by atmist, Edmonton, Alberta, Canada, helped caregivers of older adults with Alzheimer disease and related dementia and multiple chronic conditions; (2) which features of MT4C caregivers found most and least beneficial; and (3) what changes would they would recommend making to MT4C. Methods: This study was part of a larger multisite mixed-methods pragmatic randomized controlled trial. The qualitative portion of the study and the focus of this paper used a qualitative descriptive design. Data collectors conducted semistructured, open-ended, telephone interviews with study participants who were randomly allocated to use MT4C for 3 months. All interviews were audio-taped and ranged from 20 to 40 min. Interviews were conducted at 1 and 3 months following a baseline interview. Qualitative content analysis was used to analyze collected data. Results: Fifty-six caregivers from Alberta and Ontario, Canada, participated in either one or both of the follow-up interviews (89 interviews in total). Caregivers explained that using MT4C (1) encouraged reflection; (2) encouraged sharing of caregiving experiences; (3) provided a source of information and education; (4) provided affirmation; and for some participants (5) did not help. Caregivers also described features of MT4C that they found most and least beneficial and changes they would recommend making to MT4C. Conclusions: Study results indicate that a self-administered psychosocial supportive Web-based resource helps caregivers of community-dwelling older adults with Alzheimer disease and related dementia and multiple chronic conditions with their complex caregiving roles and responsibilities. The use of MT4C also helped caregivers in identifying supports for caring, caring for self, and planning for future caregiving roles and responsibilities. Caregivers shared important recommendations for future development of Web-based supports. ",
doi="10.2196/aging.8475",
url="http://aging.jmir.org/2018/1/e2/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518230"
}


@Article{info:doi/10.2196/formative.9083,
author="Zafeiridi, Paraskevi
and Paulson, Kevin
and Dunn, Rosie
and Wolverson, Emma
and White, Caroline
and Thorpe, Adrian Jonathan
and Antomarini, Marco
and Cesaroni, Francesca
and Scocchera, Francesca
and Landrin-Dutot, Isabelle
and Malherbe, La{\"e}titia
and Lingiah, Hendi
and B{\'e}rard, Marie
and Giron{\`e}s, Xavier
and Quintana, Maria
and Cort{\'e}s, Ulises
and Barru{\'e}, Cristian
and Cort{\'e}s, Atia
and Paliokas, Ioannis
and Votis, Konstantinos
and Tzovaras, Dimitrios",
title="A Web-Based Platform for People With Memory Problems and Their Caregivers (CAREGIVERSPRO-MMD): Mixed-Methods Evaluation of Usability",
journal="JMIR Formativ Res",
year="2018",
month="Mar",
day="12",
volume="2",
number="1",
pages="e4",
keywords="dementia",
keywords="technology",
keywords="social support",
keywords="caregivers",
abstract="Background: The increasing number of people with dementia (PwD) drives research exploring Web-based support interventions to provide effective care for larger populations. In this concept, a Web-based platform (CAREGIVERSPRO-MMD, 620911) was designed to (1) improve the quality of life for PwD, (2) reduce caregiver burden, (3) reduce the financial costs for care, and (4) reduce administration time for health and social care professionals. Objective: The objective of this study was to evaluate the usability and usefulness of CAREGIVERSPRO-MMD platform for PwD or mild cognitive impairment (MCI), informal caregivers, and health and social care professionals with respect to a wider strategy followed by the project to enhance the user-centered approach. A secondary aim of the study was to collect recommendations to improve the platform before the future pilot study. Methods: A mixed methods design was employed for recruiting PwD or MCI (N=24), informal caregivers (N=24), and professionals (N=10). Participants were asked to rate their satisfaction, the perceived usefulness, and ease of use of each function of the platform. Qualitative questions about the improvement of the platform were asked when participants provided low scores for a function. Testing occurred at baseline and 1 week after participants used the platform. The dropout rate from baseline to the follow-up was approximately 10\% (6/58). Results: After 1 week of platform use, the system was useful for 90\% (20.75/23) of the caregivers and for 89\% (5.36/6) of the professionals. When users responded to more than 1 question per platform function, the mean of satisfied users per function was calculated. These user groups also provided positive evaluations for the ease of use (caregivers: 82\%, 18.75/23; professionals: 97\%, 5.82/6) and their satisfaction with the platform (caregivers: 79\%, 18.08/23; professionals: 73\%, 4.36/6). Ratings from PwD were lower than the other groups for usefulness (57\%, 13/23), ease of use (41\%, 9.4/23), and overall satisfaction (47\%, 11/23) with the platform (P<.05). Qualitative comments related to both improvements for functionality and the platform interface. Conclusions: Although caregivers and professionals were overall satisfied with the platform, further adaptations were recommended by PwD. This reiterates the importance of the involvement of end users in the development of Web-based interventions. Recommendations from users in this paper apply for the interface and functionality of a wider range of Web-based support interventions. ",
doi="10.2196/formative.9083",
url="http://formative.jmir.org/2018/1/e4/",
url="http://www.ncbi.nlm.nih.gov/pubmed/30684403"
}


@Article{info:doi/10.2196/aging.9025,
author="Dale, Jeremy
and Loew, Joelle
and Nanton, Veronica
and Grason Smith, Gillian",
title="Coproduction of a Theory-Based Digital Resource for Unpaid Carers (The Care Companion): Mixed-Methods Study",
journal="JMIR Aging",
year="2018",
month="Feb",
day="28",
volume="1",
number="1",
pages="e1",
keywords="family caregivers",
keywords="caregivers",
keywords="self efficacy",
keywords="information technology",
keywords="frailty",
keywords="Internet",
abstract="Background: Family and other unpaid carers are crucial to supporting the growing population of older people that are living outside residential care with frailty and comorbidities. The burden associated with caring affects carers' well-being, thus limiting the sustainability of such care. There is a need for accessible, flexible, and responsive interventions that promote carers' coping and resilience, and hence support maintenance of the health, well-being, and independence of the cared-for person. Objective: This study aimed to coproduce a digital program for carers to promote resilience and coping through supporting effective use of information and other Web-based resources. Its overlapping stages comprised the following: understanding the ways in which Web-based interventions may address challenges faced by carers, identifying target behaviors for the intervention, identifying intervention components, and developing the intervention prototype. Methods: The study was informed by person-based theories of coproduction and involved substantial patient and public involvement. It drew on the Behavior Change Wheel framework to support a systematic focus on behavioral issues relevant to caring. It comprised scoping literature reviews, interviews, and focus groups with carers and organizational stakeholders, and an agile, lean approach to information technology development. Qualitative data were analyzed using a thematic approach. Results: Four behavioral challenges were identified: burden of care, lack of knowledge, self-efficacy, and lack of time. Local health and social care services for carers were only being accessed by a minority of carers. Carers appreciated the potential value of Web-based resources but described difficulty identifying reliable information at times of need. Key aspects of behavior change relevant to addressing these challenges were education (increasing knowledge and understanding), enablement (increasing means and reducing barriers for undertaking caring roles), and persuasion (changing beliefs and encouraging action toward active use of the intervention). In collaboration with carers, this was used to define requirements for the program. A resources library was created to link to websites, Web-based guidance, videos, and other material that addressed condition-specific and generic information. Each resource was classified according to a taxonomy itemizing over 30 different subcategories of need under the headings Care Needs (of the cared-for person), General Information and Advice, and Sustaining the Carer. In addition, features such as a journal and mood monitor were incorporated to address other enablement challenges. The need for proactive, personalized prompts emerged; the program regularly prompts the carer to revisit and update their profile, which, together with their previous use of the intervention, drives notifications about resources and actions that may be of value. Conclusions: The person-based approach allowed an in-depth understanding of the biopsychosocial context of caring to inform the production of an engaging, relevant, applicable, and feasible Web-based intervention. User acceptance and feasibility testing is currently underway. ",
doi="10.2196/aging.9025",
url="http://aging.jmir.org/2018/1/e1/",
url="http://www.ncbi.nlm.nih.gov/pubmed/31518238"
}