JMIR Publications

ABSTRACT

Background:

Informal carers make a substantial contribution to health and social care, providing care and support to growing numbers of sick, disabled or frail relatives and friends. The importance of carers having access to relevant information, guidance and support that is adaptive to changing needs and circumstances is well recognised. However, most carers still experience this as lacking, and often face intense difficulties navigating health and social care systems. To address this, Care Companion was co-developed with carers as a free-to-use, online intervention that provides access to a broad range of personally-relevant information. It links to local and national resources relevant to the carer's individual needs, as well as providing other functions that enable systematic recording of information relevant to their role as a carer. Since 2018 it has been available to all carers in one English region (known carer population of approximately 64000), with local health, community and social care teams encouraging carers to use it.

Objective:

To investigate the real-world take-up of Care Companion, and the experience of carers who register to use it and by organisational stakeholders who promote its use.

Methods:

The research had a mixed-methods design. Data included: routine data from carers' use of the Care Companion website; surveys completed by carers recruited through general practice; interviews with carers and health and social care providers about their experience and views of Care Companion. Data analysis. Quantitative data were analysed using descriptive statistics. Interview data were analysed thematically and then triangulated to create overarching themes.

Results:

Despite a wide range of awareness-raising activities with relevant health, social care and community organisations, registration and repeated use of Care Companion was low with 556 (0.87%) of known carers registered to use it; median of two visits (mean 7.2; mode 2) in total per registered user. Interviews with carers (N=29) and stakeholders (N=12) identified six key themes that influenced registration and use: awareness of Care Companion; motivation to register; perceptions about Care Companion content and function; relevance to personal circumstances; competing demands and priorities; availability and use of digital technology. While many participants recognised Care Companion as having potential usefulness, few saw it as being of direct relevance to their personal circumstances. For some, concerns about social isolation and lack of hands-on support were viewed as more pressing issues than a need for information.

Conclusions:

Despite having been carefully co-produced, this online personalised information resource had low take-up and repeated use, and appeared to offer little overall benefit to the area’s population of carers. Whether greater take-up and use would have occurred with further development, or with closer integration into the overall delivery of health and social care support for carers requires further investigation.