This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Aging, is properly cited. The complete bibliographic information, a link to the original publication on http://aging.jmir.org, as well as this copyright and license information must be included.
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.
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.
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.
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.
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.
The prevalence of dementia is increasing, and more family caregivers are involved in caring for people living with dementia. Despite their key role, many caregivers may have little knowledge of the disorder, community resources, or the caregiving role. As a result of the impact of dementia on caregivers, the Canadian National Dementia Strategy, Ontario Dementia Strategy, Health Quality Ontario Quality Standards for Dementia, and other clinical guidelines highlight dementia caregiver education as an important component of quality care [
Internet-based caregiver intervention has emerged as a potential solution to address some of these challenges. A recent needs assessment outlined that caregivers were actively seeking trustworthy sources of information about dementia on the internet [
We developed iGeriCare (Division of e-Learning Innovation, McMaster University), a multimodal e-learning intervention, to help educate family caregivers of people with dementia. It was developed by experts in dementia and web-based learning as well as family caregivers to help meet the needs of caregivers by improving their knowledge and skills as well as by raising awareness of strategies and services to improve their quality of life and that of the person with dementia. iGeriCare consists of 10 multimedia e-learning lessons, curated resources, a series of weekly
Although web-based education may be an effective intervention, little is known about how best to implement it in various family caregiver education settings [
We conducted a qualitative study consisting of semistructured interviews with 12 individuals involved in dementia care and caregiver education and used a grounded theory approach [
The study was conducted in several key stakeholder health care settings in Southern Ontario, Canada, including family medicine clinics, geriatrics and/or dementia clinics, geriatric psychiatry, and others. The interviews were conducted from October 31, 2018, to March 25, 2019.
A total of 12 participants were interviewed, each with a key role in dementia care and/or caregiver education in their organization. Participants provided written informed consent, and the protocol was approved by the Hamilton Integrated Research Ethics Board at McMaster University.
We targeted opinion leaders who actively work with caregivers from a range of disciplines, including geriatrics, neurology, psychiatry, family medicine, and community care. We targeted a wide range of practice settings, including hospitals, outpatient clinics, and advocacy organizations. An internet search was conducted to identify potential participants from a range of disciplines. For convenience, we stayed within Southern Ontario as we wanted to conduct the interviews in person. None of the participants were involved in the development of iGeriCare.
The interviews took place in or near the participants’ own offices and were conducted by 2 female research team members: a research assistant (SA) and a research coordinator (LB). Both interviewers had extensive experience in conducting interviews. The principal investigator (AL) participated in 2 interviews. Participants were asked to review the iGeriCare website before their interview. If they were unable to review the website before their interview, they were given the opportunity to review it before beginning the interview. The interviewers used semistructured interview questions and asked clarifying questions as needed (
Transcripts were analyzed using a grounded theory approach [
A total of 14 individuals were initially invited to participate; 1 was unavailable for the interview and 1 did not respond to correspondence (
We present the key findings within each of the 5 CFIR domains and the relevant constructs within each domain.
Participants’ demographic information.
ID | Gender/ sex | Reviewed website before interview | Workplace | ||||||
|
|
|
Division | Role | Setting | Practice location | Dementia or memory clinic | Organization | McMaster affiliation |
001 | Male | Substantial review | Family medicine | Physician | Outpatient and/or community | Urban | Yes | Health care organization and university | Yes |
002 | Male | Substantial review | Family medicine | Physician | Outpatient and/or community | Urban | Yes | Health care organization and university | Yes |
003 | Male | Minimal or no review | Geriatrics | Physician | Outpatient and/or community | Urban | Yes | Health care organization and university | No |
004 | Female | Substantial review | Geriatric psychiatry | Physician | Outpatient and/or community and inpatient | Urban | No | Health care organization and university | Yes |
005 | Female | Substantial review | Nursing | Researcher | Outpatient and/or community | Urban and rural | No | University | Yes |
006 | Male | Minimal or no review | Neurology | Physician | Outpatient and/or community and inpatient | Urban | No | Health care organization and university | Yes |
007 | Female | Minimal or no review | Family medicine | Physician | Outpatient and/or community | Urban and rural | Yes | Health care organization and university | Yes |
008 | Female | Substantial review | Geriatrics | Physician | Outpatient and/or community and inpatient | Urban | Yes | Health care organization and university | Yes |
009 | Female | Minimal or no review | Geriatrics | Physician | Inpatient | Urban | No | Health care organization and university | No |
010 | Female | Substantial review | Nursing | Researcher | Outpatient and/or community | Urban and rural | No | University | Yes |
011 | Female | Substantial review | Social science | Coordinator | Outpatient and/or community and inpatient | Urban and rural | No | Nonprofit organization | No |
012 | Male | Substantial review | General internal medicine | Physician | Outpatient and/or community and inpatient | Urban | No | Health care organization and university | Yes |
Intervention characteristics refer to the specific characteristics of iGeriCare [
Theme 1 is as follows: iGeriCare was generally perceived as a high-quality, trusted intervention for caregiver education, with many participants highlighting the relative advantage of a web-based format.
The
I really like this, partly because it’s knowledge that has been vetted, so it’s not the same as googling dementia and you really can’t control what comes up and what doesn’t. So, I like the fact that it’s summarized it’s at a level where it is easily digestible, and it’s not something that is difficult for family members.
It’s a very nice-looking website...from what I’ve seen it’s very comprehensive. I mean like, you’re hitting caregiver wellness, you’re hitting apathy, you’re hitting driving—you know, you’re hitting promotion of brain health. I mean, it seems like, I don’t see any gaps just from a superficial look at it. It looks like its gone through multiple passes and stuff. It looks very polished. It seems to me that a lot of work has gone into it.
I think with the videos and that sort of thing [iGeriCare] is a much better alternative. It’s something that allows them to sit and watch and say, ‘oh that’s a digestible portion of information that I can take.
I think it is important. We can’t possibly educate everybody about all of this in the context of clinic nor does it always feel like the right place for it. People just sometimes need to learn on their own at home, and then come back with questions once they’ve had a chance to be exposed to it.
The hundreds of people that I’ve heard say in an education series, ‘I wish my brothers were here’, or ‘I wish my father would have joined me.’ And they’re not coming through our door, and they’re not going to their local chapter, or if they live in another part of the province—that they can access [iGeriCare].
A few participants did, however, voice concerns about the format, noting that much of their current caregiver education was delivered with more traditional approaches such as face-to-face delivery or printed pamphlets. In addition, there remains a perception that older adults do not use the internet or search the web for information:
Many of the older persons that we deal with are either not really that computer-savvy, maybe they spend a little bit of time on the internet and might play some games on their computer, but many of them don’t use it to search for information. I think that’s a younger generation kind of thing.
Theme 2 is as follows: iGeriCare is perceived as being readily usable, with minimal disruption to existing workflows, and it can be customized or revised as needed.
The iGeriCare intervention was seen to have minimal barriers to immediate implementation, aligning with the CFIR construct of
It will be helpful...I can see us having it up during our memory clinic.
I am thrilled, this is really phenomenal; I’m going to immediately start using this.
We’re already using it. We have the [iGeriCare educational prescription pad], and I give it to families as I’m talking about supports.
The overall construct of
The outer setting is the economic, political, and social context within which an organization resides [
Theme 1 is as follows: iGeriCare was seen to meet patient needs because of its alternative format and because the flexibility of
The
[Education] is a lot of “here are some pamphlets,” and a lot of relying on the caregiver or on the person who may have a Mild Cognitive Impairment diagnosis to go on and sort of read for themselves. So, it can be a little overwhelming...it’s a lot of text and sometimes you can get overwhelmed...by the end of that hour and a half, both of them are tired right, and so something like this [iGeriCare] is great to say, “Here, you don’t need to try to remember everything I said, I really think you should read this and this, and when I see you again in 6 months, we can answer any questions.”
I definitely think that there’s obviously a need. Some people don’t like to go to a [location] to be with other caregivers, that’s not how they learn.
As noted above, patient and/or caregiver needs were seen to be met through the increased ease of access for a wider audience than traditional education practices currently in place. Health care provider participants highlighted the importance of having alternative resources available for delivery to patients and families.
The inner setting refers to the provider’s specific practice setting and includes features of structural, political, and cultural contexts through which the implementation process will proceed [
Theme 1 is as follows: Most participants saw the iGeriCare intervention as a good fit with their existing workflows. Conversely, a few participants expressed concerns about its implementation within their practice settings and existing workflows.
Many participants stated that iGeriCare was presently being used or could easily be implemented because of its
I think that it would definitely streamline my practice. Because I know that it’s one resource that I can trust, and I don’t need to be looking for.
If I have a patient with dementia and I meet with the family I would say, “there’s a nice program [iGeriCare] that you could look at, go look at it and then when you come back to see me, later on, we can go over things that you don’t understand.”
I give my overall framework for the patient, I then give them this Alzheimer’s Society pack, with lots of information...and I give them a referral sheet.
I think we do a lot of that already via other ways, and I think that for the right person, I could see perhaps if it were a younger caregiver who was looking for more detailed information, perhaps that might be something we might include—but I don’t think I would.
Characteristics of individuals includes aspects that impact the individuals involved in the intervention and/or implementation process [
Theme 1 was as follows: Many participants were familiar with the intervention and felt confident of their ability to implement iGeriCare.
I thought it was high quality, overall very useful.
It would certainly fit with the National Dementia Strategy.
I think it’s great that people can go on, listen again to a session that they might have already done, share it with family and friends so there’s consistency in messaging. We want to get everyone within a family network or small community on the same page if you will.
Theme 2 was as follows: The relationship of the participants to the iGeriCare developers’ institution affected their degree of commitment to the intervention.
Participants did not specifically reference
A successful
Theme 1 was as follows: Most participants felt that they could implement iGeriCare using collateral promotional materials or by sharing the website’s URL.
Most participants were confident of their ability to implement iGeriCare according to plan; this aligns with the CFIR construct of
I think the only way that I can easily pass this information on to patients and their families is if I had something in my hand that I could give them to go away with. Whether it’s a card or a link to a website something that can say, “I can vouch for this, this is a good resource, I need you to look at this.”
This is great [iGeriCare educational prescription pad], this is so easy you know it’s something that can be ready to pull out for every patient.
Although most participants felt that they could easily implement iGeriCare, one barrier identified was the need for a constant reminder about the resource and keep it front of mind to the organizations and individuals:
In primary care there are barriers to any new resource or any new community program and the biggest one is just the “noise”—the sheer number and volume of programs and tools and resources that are coming at us.
Theme 2 was as follows: Participants suggested several strategies to continue engaging stakeholders, including finding champions, engaging others in the circle of care, presenting at medical conferences, and incorporating the resource into various health professions’ curricula.
Participants commented on the importance of attracting and involving appropriate individuals in the implementation and use of the intervention through a combination strategy of social marketing, education, role modeling, training, and other similar activities, which align with the CFIR construct of
I do think it requires someone that is a champion that can bring it in and talk to the benefits of it. And I think when people kind of see how this can match their learning gaps or their knowledge gaps, then that’s when you are going to get it to pick up for that.
That might be something good to send back to the family doctor to say, “look, I’ve recommended these things for your families and I think that they many actually come to talk about. Just so you know these are the resources,” and to have that, so the family doctors are aware of, “maybe I should take a quick look at what’s gone on,” and things like that. [Participant 001]
It might help with Alzheimer Society’s or First Links navigators, where a lot of this one-to-one peer education may be saved by helping people go through this, but I think it could certainly augment the care that’s being provided, and it might help provide again support that actually might save some of the [the time of] allied health staff.
What about the family docs, are you going to be explaining it to them? That’s where the patients really are...
In addition to the above-mentioned barriers and facilitators related to the implementation of iGeriCare within existing clinical workflows, we also discovered broader insights into the implementation of web-based education. Participant-identified barriers and facilitators related to the implementation of web-based educational interventions for caregivers related to CFIR constructs are summarized in
Intervention characteristics
Facilitator
The design quality of the intervention, in part because of its simplistic layout, large icons, minimal effort
The intervention is easily implemented in everyday workflows and allows health care providers to trial with users before committing
Barrier
Skepticism about the relative advantage of the web-based nature of the intervention
The intervention source being seen as externally developed
Outer setting
Both facilitator and barrier
The format of the intervention being web-based is variably perceived as both a facilitator and a barrier. There is tension between health care providers as some have a positive opinion of the web-based format and others will not recommend because of concerns that the format might not be useful for some caregivers
Facilitator
The content and format are perceived to be aligned with caregiver needs
Some networking with other external organizations (ie, Alzheimer Society, hospitals, memory clinics, family health teams)
Barrier
The lack of language options, cultural adaptations, and alternative formats (ie, print)
The lack of external policy and incentives to encourage adoption
Inner setting
Facilitator
The intervention easily fits into and is compatible with existing workflows
Some settings have a higher relative priority than others for implementation
Access to knowledge and information
Barrier
Health care provider concerns over the amount of time it would take to review materials before recommending to patients and families. Lack of integration with electronic medical records
Lack of tension for change
Lack of organizational incentives and rewards
Characteristics of individuals
Both facilitator and barrier
Level of knowledge about the intervention
Facilitator
Identification with the developer organization
Tech-savviness
Barrier
Identification with an external organization
Technophobe and/or assumes older adults do not use the internet
Process
Facilitator
Ease and enthusiasm to execute
Existing promotional materials
Existing champions and opinion leaders
Barrier
Needs ongoing campaigns to maintain awareness of resource
Needs constant reminders
Costs of promotional materials
Costs of attending conferences and/or identifying and promoting resource to new champions
In this study, experts in dementia care provided detailed feedback about iGeriCare as well as on barriers and facilitators to implementing a web-based dementia education program for caregivers in general. iGeriCare aligns with the paradigm of shared decision making and the health care triad (the term
This study adds to the growing body of literature on web-based interventions for caregivers of people with dementia; in particular, it is one of the few studies to examine implementation. Despite the increase in research in this area—it has been estimated that the number of publications in this field increases by 13% each year, including several systematic reviews—we could find very little research published regarding the implementation of web-based caregiver interventions [
We found several potential barriers and facilitators for the implementation of web-based caregiver education tools in clinical practice.
Participants appreciated the instructional design and high-quality web design of iGeriCare, features that are rarely described in the published literature. Web-based caregiver interventions could be quite heterogeneous and could include different components such as health information, education, peer support, professional support, web-based monitoring, or combinations of these components [
We found that participants were more favorably predisposed to the intervention and its implementation if they identified with the organizational developers of iGeriCare. This aligns with the CFIR construct of
Most participants felt that providing caregiver education in a web-based format could reduce the gap for family caregiver support and help meet their needs, consistent with the literature [
However, there were some more ambivalent opinions about whether the web-based format was optimal to meet the needs of caregivers; in particular, a couple of participants felt that older adult caregivers did not use the internet for health information. Despite encouragement from various provincial, national, and global guidelines and quality standards encouraging and referring to the use of web-based education for older-adult caregivers, it is challenging to change the attitudes of potential intervention agents about educational methods and formats. Internet usage of Canadians aged 65 years and above doubled from 32% to 68% between 2007 and 2016, a trend that is expected to continue given the high rates of internet usage by those aged between 45 and 64 years [
One finding of interest relates to the fact that none of our participants mentioned any external policies or incentives that might drive decisions about adoption. This is interesting given the recent dementia quality standards that promote caregiver education. More incentives might be an external force to help influence and encourage the implementation of effective web-based caregiver educational interventions [
Our findings that most participants saw iGeriCare as a good fit with their clinical workflows and were keen to implement the intervention are aligned with the research around the constructs of compatibility of the implementation climate, the relative priority for caregiver education, and readiness for implementation. Participants represented a range of different clinical practice settings and disciplines with different structural characteristics. This did not seem to impact their perceptions of the intervention or desire to implement. Many of the participants were affiliated with the same organization—McMaster University—an organization with a relatively flexible culture that embraces innovation. Culture has been shown to have a significant influence on the implementation effectiveness and may help explain the enthusiasm for the intervention among participants from within this organization [
Most participants enthusiastically voiced their readiness for implementation. This is consistent with the elements of iGeriCare, such as ease of access to digestible information, knowledge about the intervention and how to incorporate it into work tasks, and the level of resources required to implement the intervention [
The amount of time an organization has to spend reviewing and approving a new web-based resource and the current culture of the organization are potential barriers to the implementation of web-based caregiver interventions. However, web-based educational interventions can align with existing workflows and can in turn help overcome barriers such as time constraints. Our finding of readiness to implement may also reflect the fact that our participants were predominantly leaders with decision-making power and/or self-efficacy to implement the intervention. Leadership engagement with the support of clinic administration and physicians is critical for the successful implementation of caregiver education delivered on the web [
Our findings reflected the importance of 2 constructs related to the characteristics of individuals: (1) individual identification with the organization and (2) knowledge and beliefs about the intervention. Individual identification is a broad construct related to how individuals perceive the organization and their relationship and degree of commitment to that organization. These attributes may affect the willingness of staff to fully engage in implementation efforts or use the intervention [
The construct of knowledge and beliefs about the intervention was particularly relevant. We found that participants’ knowledge about the intervention itself and opinions about older adults’ usage of web-based health resources were important factors in their perception of the intervention and its implementation. Participants with little familiarity with iGeriCare or those who did not think that older adults used the internet were much less likely to consider the implementation. Individual clinician attitudes about web-based caregiver education may not be based on evidence but rather on personal opinions of preference for the format of delivery.
Many participants were physicians. The characteristics of individuals and their knowledge and beliefs about interventions may be particularly important constructs in contexts where physicians are the primary implementation agents, as they tend to have a lot of autonomy with regard to implementing interventions, especially within certain practice settings (such as ambulatory clinics or more
With regard to the CFIR domain of
One of the most challenging elements of process relates to the construct of
Some limitations should be considered when interpreting the results. First, the recruitment of professionals to the project was limited to those residing in Southern Ontario, which might have led to an underrepresentation of key stakeholders in the discussion. Second, it might also be a limitation that several stakeholders were directly affiliated with the same organization as the developers of the intervention. However, local and regional implementation of iGeriCare was a key goal of the project; therefore, understanding the attitudes of local opinion leaders was important. We also tried to recruit from a range of different disciplines. Challenges for coding consensus have been identified as a limitation of the CFIR because of the large overlap of constructs within and between domains [
In summary, we found that opinion leaders in dementia care were generally enthusiastic about implementing high-quality web-based dementia caregiver education. Key facilitators included the quality of the design of the intervention, ease of implementation, and value added for both the health care system and caregivers. Key barriers included the perception that the intervention came from an external source or organization; lack of policy incentives; current normative professional behaviors around health teaching and/or caregiver education; individuals’ knowledge of the intervention and opinions about older caregivers’ usage of the internet; and the costs and challenges with regard to ongoing engagement, awareness raising, and promotion of the intervention. Despite an increase in the number of interventions and research on web-based caregiver interventions, there is very little work to date describing their implementation. Frameworks such as CFIR and others are helpful in delineating the various domains related to implementation of web-based caregiver interventions. Further research with regard to the specific implementation of caregiver education interventions would be beneficial, given the increasing development of these interventions.
Our results have led us to increase the dissemination of collateral promotional materials, continue engagement with various champions and intervention agents, and continue ongoing multimodal strategies for implementation. A new educational prescription web application for clinicians is being field-tested. This innovation may help determine the reach of the intervention, in addition to providing other measures of whether the educational prescription gets
Qualitative interview guide.
NVivo coding tree export.
Consolidated Framework for Implementation Research
The authors disclose receipt of the following financial support for the research, authorship, and/or publication of this paper: the iGeriCare Initiative was funded by the Canadian Centre for Aging and Brain Health Innovation powered by Baycrest. Additional support was provided by the GERAS Centre for Aging Research at Hamilton Health Sciences; Hamilton Health Sciences Foundation; the Alzheimer Society Foundation of Brant, Haldimand Norfolk, Hamilton Halton; McMaster University; the McMaster University Department of Medicine Internal Career Award (RS); and the Division of e-Learning Innovation at McMaster University. AL receives support through the John R Evans Chair in Health Sciences Educational Research and Instructional Development, Faculty of Health Sciences, McMaster University. The authors would like to thank all the health care providers who participated in this project for their time, thoughtful comments, and helpful recommendations for program improvement.
AL and RS led the conception and design of the study. SA and LB conducted all participant interviews. SA transcribed the audio recordings of interviews. AL, SA, and LB developed and applied the coding scheme. AL and SA reviewed the coding, identified themes, and drafted the manuscript. RS, AP, and SM provided revisions for the manuscript. All authors have read and approved the final manuscript.
AL and RS are co-owners of the iGeriCare intervention with McMaster University.