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.
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.
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.