Coproduction of a Theory-Based Digital Resource for Unpaid Carers (The Care Companion): Mixed-Methods Study

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...

The potential of peer support to extend the reach of digital health

“…In terms of broadening digital access, various models of peer support are possible and require exploration. For example, as part of another current digital intervention project 29 led by a member of our study team, peers with varying levels of IT experience have been recruited via a local support group overseen by a national umbrella organisation. The group members are involved on a voluntary basis in introducing potential users to an online platform to support informal carers.…”

The potential of peer support to extend the reach of digital health

“…35 In terms of broadening digital access, various models of peer support are possible and require exploration. For example, as part of another current digital intervention project 36 led by a member of our study team, peers with varying levels of IT experience have been recruited via a local support group overseen by a national umbrella organisation. The group members are involved on a voluntary basis in introducing potential users to an online platform to support informal carers.…”

Designing and developing a co-produced theoretical and evidence-based online support for family caregivers of people with dementia at the end of life

“…Parkinson and colleagues explored what works to support family caregivers of people with dementia and followed an established realist methodology. This theory has been used to guide the development of a similar digital resource to support caregivers of older people [46].…”