To carry out this scoping review, Arksey and O’Malley’s methodological framework [22,23] for conducting scoping reviews was followed. The five stages outlined by Arskey and O’Malley’s framework are as follows:

The identified research topic includes a wide range of study designs addressing contexts in many countries as well as different technology solutions and a population of caregivers caring for older people with different chronic conditions. In order to comprehensively synthesize evidence to map this broad, complex, and emerging field of study, this framework has been selected as it is an appropriate approach to map a complex research topic and explore studies that use various methodologies, which is expected to be the case in this research topic [22,23]. Khalil et al [24] suggested using this inclusive approach in conducting scoping reviews to avoid potential exclusion of important information. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines have been followed (as far as relevant for a scoping review according to the PRISMA extension for scoping reviews) to verify the structure and content of this scoping review [25]. The checklist for the reported items according to the PRISMA extension for scoping reviews can be found in Multimedia Appendix 1.

The research question for this scoping review was identified from a preliminary scan of the literature and meetings with different stakeholders representing national level caregiver organizations, researchers, and experts from the European Association Working for Carers (Eurocarers) also involving research centers working in these areas, the Centre for Socio-Economic Research on Ageing of the Italian National Institute of Health and Science on Ageing (IRCCS-INRCA), University Medical Center Groningen, and the Department of Economics and Social Sciences of Marche Polytechnic University. Due to the rapid technological change in recent years, there is a lack of consensus in the academic literature on the challenges faced by informal caregivers—and specifically those who care for dependent older adults living at home with chronic conditions—in using ICT-based support solutions. Hence, the following research questions have been developed for this scoping review: What are the challenges of the deployment of ICT-based support solutions delivered over the internet for informal caregivers of older people? What are the recommendations for overcoming these challenges?

In order to capture the most relevant research studies in different domains (medical, engineering, social, economic, etc) on the challenges faced by informal caregivers of older people in using ICT solutions, the following databases were used to locate the relevant literature, as they contain relevant works in different domains: PubMed, IEEE library, and Scopus. Due to the rapid technological change in recent years, date restrictions were set in the period from January 1, 2015, to December 31, 2019, to capture recent and up-to-date relevant literature on ICT solutions. In order to address the components of the research questions, keywords and search terms were classified into four main groups:

An overview of the different groups of keywords is presented in Table 1. Keywords were searched using Boolean operators. The search strategy can be found in Multimedia Appendix 2.

In order to best address the indicated research questions, inclusion and exclusion criteria have been identified.

The inclusion criteria were as follows:

The following exclusion criteria were applied:

The database searches retrieved 454 studies for consideration. After reviewing further publications suggested by researchers and experts from Eurocarers, INRCA-IRCCS, University Medical Center Groningen, and the Department of Economics and Social Sciences of Marche Polytechnic University and reviewing the studies’ reference lists, an additional 6 studies were identified through these external sources. After removing duplicates, 359 studies remained.

Thereafter, a 2-stage process was followed. During the first one, the retrieved studies were screened by title and abstract to determine whether they met the selection criteria. In this first stage, 199 studies were excluded after title and abstract screening, and 160 publications identified for full text reading. In the second stage, 31 articles met the selection criteria and were included for the scoping analysis. In order to effectively manage the process of literature identification, citations obtained from the searches were imported into EndNote software (Clarivate Analytics) and Zotero software (Center for History and New Media at George Mason University) for reference management. Consequently, a master citation database was constructed to collate all the citations from various sources. Built-in functions of the software allowed duplicates to be easily detected. As consistent with the scoping review approach [22,23], the methodological quality of the published articles was not a selection criterion. This enabled the inclusion of a range of development, implementation, and evaluation studies using different methodologies. The overall study selection workflow is illustrated in Figure 1.

Data charts were created to organize information from the included studies. In line with Arksey and O’Malley’s methodological framework, data entered for each study included authors and publication year, study type and methodology, study location, study aim, condition of cared-for family member, caregiver sample, and relationship of the caregiver to the care recipient.

Out of the 31 studies included in this scoping review, 17 were qualitative studies, 4 were quantitative studies, 1 was a systematic literature review, 1 was an integrative literature review, and 8 used mixed methods. Of these 31 studies, 10 studies were conducted in the United States, 4 studies in Canada, 3 studies in the United Kingdom, 3 studies in the Netherlands, 3 studies in Sweden, 3 studies were international, 2 studies in Germany, and 1 each in Spain, Italy, Poland, Denmark, France, and Australia. A summary of the information for each included publication is shown in Table 2.

NVivo software version 12 (QSR International) was used to collect and organize study data. Full articles were imported as pdf files into NVivo software program for data extraction, analysis, and coding. 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 it pertained to each of the research questions. Inductive thematic analysis was conducted as described by Braun and Clarke [56] to analyze the texts from the included studies. Patterns of challenges of the deployment of ICT solutions delivered over the internet for informal caregivers of older people were filtered out from an initial literature search and the previous meetings with experts in the field to develop an optimal category system. If challenges were found that did not fit into any previously known pattern, categories were iteratively added [23,57]. For each identified challenge, a list of recommendations on how to overcome it was created based on the findings of this scoping analysis and the suggestions provided by the reviewed studies as a guide for future development, research, and innovation in the area of ICT solutions for informal caregivers.

This section provides a detailed description of the emerging themes around the challenges influencing the deployment of ICT solutions for informal caregivers that rose from the analysis of the included studies. According to the analyzed studies, four major categories of challenges could be identified:

Table 3 provides an overview of the identified challenges, showing the prevailing theme and the possible co-themes for each challenge. The categories were used to organize identified challenges as commonly presented in the studies reviewed. Under each individual theme, the challenges were ordered from the least overlapping (ie, most specific to the relevant theme) to the most overlapping (ie, least specific to the relevant theme). Due to the complexity of ICT and the interconnectedness of the identified challenges, a nonoverlapping categorization of individual identified challenges was not possible. In order to optimize the classification system, the categories were refined through several reiterations of the revision process. Each of the identified challenges was assigned to the most prevailing theme and additional possible co-themes. For instance, the challenge privacy came under the prevailing theme ethical challenges, as the abuse of data leads to violation of ethical principles, but it also fell into the additional possible co-theme technology-related challenges, as ICT solutions need security authentication measures and strong encryption mechanisms.

In the following, a brief description is provided for each of the subdimensions identified for each macro-challenge.

The progress that has been taking place in developing ICT solutions for informal caregivers has been widely recognized [15-21]. However, many informal caregivers find it challenging to incorporate such technologies into their daily work routines because of the struggles experienced with the technological component of the ICT-based solutions (eg, the difficulty in using technology solutions developed for informal caregivers and their poor design). This theme provides an overview of the identified challenges related to this issue.

There is a common concern in the literature [26,27,31,43,52,54,58] that there are many organizational gaps in terms of the fragmentation of ICT-based support solutions for informal caregivers, lack of coordination between statutory support solutions for informal caregivers, and lack of awareness of the availability of these solutions. This theme highlights some of these organizational challenges that fall between the micro- and macro-level.

The literature identifies a series of socioeconomic issues that might have a negative influence on the deployment of ICT-based support solutions delivered over the internet for informal caregivers of older people. Questions such as who should fund ICT solutions for informal caregivers and whether a successful business model can be demonstrated for these solutions are common in the literature [26,36,38,42,44,49,52,58]. In the following, some of the challenges related to this category of issues are highlighted.

The use of ICT solutions raises ethical concerns as issues of privacy and autonomy, among other moral issues, can be present. Questions about how ICT solutions are dehumanizing the care process, how the privacy of informal caregivers and their care recipients is protected, or the confidentiality of the information provided are raised throughout the literature [29,32,34,35,39,41,46,53].

The emerging themes obtained during this scoping analysis allowed the extraction of insights that were grouped to create a series of recommendations for overcoming the challenges of deployment of ICT solutions based on the suggestions from the reviewed studies. Table 4 presents, for each identified challenge, recommendations to overcome this challenge based on the findings of this scoping analysis.

Table 5 provides an overview of the prevailing perspective and additional possible perspectives for intervention for each challenge. This overview aims to identify at which level possible solutions to each specific challenge might take place. Solutions may take place at the following levels: system (macro), provider (meso), and user (micro). For instance, possible intervention perspectives for the challenge “lack of awareness” may be at the user level, as informal caregivers are unlikely to access these solutions without awareness and information on the available ICT solutions and their benefits, but they could also be at the system and provider levels, also needed to raise awareness among stakeholders, including policy makers and health care professionals, about support opportunities afforded by ICT.

The purpose of this scoping review was to identify challenges related to deployment of ICT solutions delivered over the internet for informal caregivers of older people. Emerging themes for these challenges were divided and classified for better understanding. These insights were used to produce a series of recommendations for overcoming the challenges of deployment of ICT solutions delivered over the internet for informal caregivers of older people. The recommendations will contribute richly to future ICT developments for informal caregivers and for this rapidly growing technological context.

The findings highlighted in this review demonstrate that deployment of ICT solutions delivered over the internet for informal caregivers of older people is coming with a variety of challenges. These range from specific challenges related to the technological component of the ICT-based service regarding 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. These findings confirm previous studies performed in the field and integrate them with a conceptually grounded classification system for organizing the different challenges into four specific thematic categories. Other studies have also highlighted the challenges of deployment of ICTs for informal caregivers [11,12,15,16]. Kluzer et al [15] mentioned that older informal caregivers with low or no digital skills have difficulties using ICT solutions and lack of a sustainable business model in ICTs is one of the major challenges of their deployment. Cucculelli et al [61] raised the importance of sustainability models in ICTs and digital innovation. The lack of successful business models in the case of ICT solutions for informal caregivers was one of the major challenges to the deployment of ICTs for informal caregivers in the European Commission’s policy report on technology-based services support and long-term care challenges in home care [16]. One explanation for that could be the economic value of ICTs as support service for informal caregivers is not always a direct translation of the value found in other areas of activity where a sustainable business model could be identified [17].

The analysis reveals that challenges to deployment of ICT solutions delivered over the internet for informal caregivers of older people are diverse and overlap at the same time. The challenges of deployment of these solutions, although reported as separate issues in the literature, appear to be at least partially interrelated. For instance, the digital illiteracy of many informal caregivers means it takes more time to use ICTs so that, with caregiving demands, less time is available. Moreover, ICT-based support solutions are perceived by informal caregivers as being too impersonal causing distrust in these solutions, which leads in turn to a feeling that ICT solutions might be less usable.

Based on the categories of challenges and the overlap existing between the elements of challenges in each theme, recommendations were extrapolated. As shown in Table 4, each challenge on its own can suggest a series of relevant recommendations. The recommendations relevant to each specific challenge might take place at different levels of intervention.

With regard to the challenges related to the technological component of the ICT-based service, the main recommendations were to follow participatory design and involve older informal caregivers in the design process as much as possible as opposed to testing with younger users. Technology solutions that are user-friendly for younger adults may not be user-friendly for older users. This is in line with other studies demonstrating that participatory design increases the adoption of technology solutions and their use by the intended users [62]. Designers need to identify how technologies are incorporated into the everyday lives of informal caregivers and care recipients [30]. Designing care coordination tools in solutions is important to allow better coordination between multiple informal caregivers in providing care, which may introduce ICT-based support solutions as time-saving solutions rather than time-consuming tools [37]. Contents introduced in ICT solutions for informal caregivers should be personalized, tailored, and specific to individual situations of informal caregivers. In this context, feedback loops should be integrated in the different solutions to improve tailoring and allow the content to be adaptive to changing needs over time. Additionally, information delivered through ICT could cause added stress if not carefully worded. Therefore, when producing content via ICT solutions, questions such as whom it will reach and how the information could affect those reading it need to be properly addressed. Adapting information to the relationship the informal caregiver has to the care recipient is important, too [26].

An example of an ICT solution that responds to the challenges mentioned is a solution such as a web platform or mobile app that offers interactive tools allowing specific information to be provided to informal caregivers. The design of the solution should be interactive with feedback loops allowing immediate response to the needs of the informal caregivers, aiding in the decision process and selection of the most relevant information [63]. Content should be developed with a focus on the basic needs of daily life and supported by demonstration videos of procedures and audio documents [63]. The design must be intuitively based and should not require prior knowledge [64]. As many informal caregivers are middle-aged to older people, the text view should have a font size compatible with the characteristic limitations of old age and allow the user to adjust it depending on the device and the viewing distance [65]. The information should be clear and simple providing alternative text information with animation, video, and audio. Decreasing the number of pages informal caregivers must access is recommended in a solution, and consequently the workload, probability of errors, and time needed for using the solution will be reduced. Validation processes in accessing accounts that involve issues such as asking the user about a significant date should be avoided as that may be confusing and demotivating for older informal caregivers.

Another important recommendation in this theme addresses the suggestion to undertake actions on a large scale to equip informal caregivers with the needed digital skills. Lamura et al [12] highlighted the importance of improving older informal caregiver digital literacy based on an early assessment of their needs and digital skills. Research showed that older adults are capable of learning and acquiring digital literacy skills as long as they know the functional benefits related to ICT [59]. Thus, this is in line with another recommendation in this theme to combine the utility of the internet with the expertise of medical professionals, including care-support hotlines, to improve informal caregiver trust in technology solutions and their functional benefits.

This issue is also connected with the recommendations formulated to address and overcome organizational challenges. Health care professionals should consider providing informal caregivers with information on ICT-based support solutions available to them and guide them in terms of selecting the most appropriate solutions. In a study analyzing 12 of the most relevant ICT-based initiatives in Europe to support informal caregivers of older people living in the community [16], raising awareness of the opportunities provided by ICT-based services for informal caregivers among all stakeholders has been identified as one of the main policy recommendations. Public information campaigns are needed to increase knowledge about support opportunities afforded by ICT for informal caregivers. At the macro-level, defining standards and regulations regarding the deployment of ICT in health care is important to overcome the fragmentation of ICT solutions [41,54].

Furthermore, health information systems should start addressing how best to get information from care recipients and their informal caregivers into the systems. It is important to support bidirectional conversations instead of focusing only on getting information from health care systems out to care recipients and their informal caregivers. The cooperation of informal caregivers with information about their care recipients is required for health care professionals to be successful in their roles and impart appropriate professional advice [66]. The interaction of health care professionals and all parties with an interest in supporting informal caregivers such as caregiver advocacy organizations with informal caregivers becomes an integral part of the value chain that supports both communication and coordination. Hence, these parties should all be more engaged with developing ICT solutions to link them with informal caregivers.

Among the topics emerging in the socioeconomic challenges theme, one of the most frequently reported difficulties in the reviewed studies is the availability of adequate funding of ICT solutions and their sustainability over time. Governments should consider 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. In this context, it is crucial to promote an exchange of effective practices, collection of evidence, and transferability of optimal solutions among localities, regions, and countries, and across different bodies and organizations in order to optimize the deployment of ICT solutions [17]. Furthermore, ICT solutions must be offered early in the caregiving process, and its support functions need to be adaptable over the course of the caring trajectory [27]. Governments and policy makers should allocate funding for improving ICT and digital infrastructures. On the other hand, even though ICT-based support services have the potential to play a role in supporting caregivers, they are not likely, by themselves, to be a complete solution. To alleviate the burden and isolation that many informal caregivers experience, governments and policy makers should consider that other social support systems are needed for informal caregivers. ICT solutions should be tailored in a coordinated way with other existing services as respite care, access to training, and recognition of skills and work-life balance measures.

Finally, with regard to the ethical challenges associated with the deployment of ICT solutions, this review recommends that ICT solutions should be sensitive to informal caregiver privacy concerns and the extent to which a technology might undermine their autonomy, control, and dignity. In this context, blending online support with involving health care professionals in the provision of professional support leads to overcoming possible skepticism. Previous studies related to ICT solutions for informal caregivers have shown that caregivers embrace the connection with health care professionals to support them in their caregiving, and this connection also enhances experiencing ICTs as safe and secure solutions [67,68].

Some limitations concerning this review need to be considered. First, a quality assessment of the methodology adopted by the selected papers was not used to exclude publications, and results from studies using a variety of study designs and author opinions were incorporated into the findings of this review. However, this is in line with the principles usually applied by the scoping review methodology, and all the publications included in this review are peer reviewed. Another limitation is that only one researcher conducted the data extraction and the analysis for this review. Hence, there is a potential that some data were not extracted. Also, a systematization of all the challenges of the deployment of ICT solutions for informal caregivers without any overlaps was not possible due to the complexity of ICTs. Although the highest possible quality standards for classification were followed in an iterative process, possible limitations in the analytical approach should be taken into account when interpreting the results. Moreover, considering recent developments in technology solutions, the classification of challenges may not cover all contexts where technology solutions (eg, assistive robots) are used on a minute-by-minute basis, and this may pose a different set of challenges. Furthermore, although a strict scoping review framework was followed, there is a chance that relevant research may have been omitted, especially when searching a large body of evidence produced in the form of non-English publications and grey literature.

Despite a growing interest in the potential offered by ICT solutions for informal caregiving, diverse and overlapping challenges to their deployment still remain. The deployment of ICT solutions for informal caregivers is accompanied by technology-related challenges such as the complexity of technology solutions and their poor design, which decrease the overall ease of using ICT solutions. 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. In many studies analyzed in this review, a lack of digital skills has been found to be a main challenge for informal caregivers in using ICTs. The study concluded that taking actions to build informal caregiver digital skills 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 all support opportunities offered by ICT. Another frequently repeated challenge in the reviewed studies is the funding of ICT solutions and sustainability. 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. Ethical issues such as dehumanization of the care process by ICT solutions and privacy protection of informal caregivers and their care recipients are also often reported throughout the literature. Informal caregivers should be given the choice to accept or refuse access to ICT solutions. In this regard, there is a necessity to involve health care professionals and municipal family care advisors known to the users of ICT in the administration of these tools in order to enhance the experience of ICT as a set of safe and secure tools.

The recommendations from this study can provide guidance and assistance for the deployment of ICT-based support solutions for informal caregivers, filling a gap in the currently available knowledge. Nevertheless, due to rapid technological innovation, more research needs to be conducted and guidelines for designing and developing ICT solutions should be made adaptable to continuous change, as new tools become available and health care delivery systems experience a technologically supported transition toward home care. More research is needed to measure the prevalence of using ICT as a source of care-related information among informal caregivers. Moreover, it is important to determine whether certain characteristics of informal caregivers such as their gender, relationship to the care recipient (eg, spouse/partner, child, friend), health status, or socioeconomic status appear to make a difference in their use of ICT to obtain care-related information. Understanding the sociodemographic and socioeconomic profiles of informal caregivers could help improve the quality of ICT solutions and tools by producing age- or gender-specific online information platforms. On the macro-level, further studies are necessary to ascertain the availability, efficiency, and sustainability of ICT-based support solutions. Research on impacts at these levels should be collected to complement those at user level and to convince policy makers to promote policy frameworks for the creation of ICT-based support solutions for informal caregivers.