Perceptions of Information and Communication Technology as Support for Family Members of Persons With Heart Failure: Qualitative Study

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.

Challenges and Recommendations for the Deployment of Information and Communication Technology Solutions for Informal Caregivers: Scoping Review

“…Technology solutions are not optimized to specific informal caregiver needs as it could be hard to recognize themselves in the information provided through ICT [ 26 ]. The content delivered via ICT solutions is often static and not specific to caregiving needs [ 34 , 41 ].…”

“…The content delivered on many ICT solutions is basic (eg, only textual content rather than video content) [ 26 , 52 ]. ICT-based support solutions lack visual graphics such as video content, which is necessary to mitigate verbose text and help informal caregivers with language barriers to access the content [ 52 ].…”

“…The literature identifies digital illiteracy as a major challenge for informal caregivers as it increases the need for additional time and effort to adopt a new technology [ 26 - 29 , 36 , 44 , 52 , 58 ]. Lack of digital skills is found to be a main barrier for informal caregivers in using ICT solutions in many studies analyzed in this review [ 26 , 28 , 29 , 31 , 37 , 48 ]. For example, as reported in a study by Barbabella et al [ 29 ], informal caregivers in their study sometimes avoid chatting and networking due to experiencing the ICT-based support solutions as technically challenging for them as they have insufficient digital skills.…”

“…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 reviewed literature acknowledges that research that assesses the use of technology for informal caregivers is still based mainly on pilot programs, and further assessment of these programs is needed to understand the main findings and possibly enlarge their scope of application [ 26 , 27 , 29 , 39 , 51 ]. Moreover, most of the informal caregiving ICT solutions currently on the market do not seem to have been developed with the guidance of caregiving researchers [ 39 ].…”