JMIR Publications

ABSTRACT

Background:

Digital mental health interventions offer a novel, accessible and self-paced approach to care delivery to family carers, i.e., relatives and close friends who support a loved one with psychosis. We co-produced COPe-support, a psychoeducational intervention delivered via an enriched online environment with network support from professionals and peers. In addition to rigorous investigation of the effectiveness of COPe-support on carers’ wellbeing and mental health outcomes, it is imperative to understand carers’ experiences in using the digital intervention and its associated online implementation and facilitation strategies.

Objective:

This study aimed to explore (1) carers’ experience and perceived acceptability of COPe-support and its different components, and (2) how they found engagement with COPe-support affected their own wellbeing and caregiving.

Methods:

We conducted a qualitative study, individually interviewing 35 carers after their use of COPe-support for 8 months through an online randomised controlled trial across England. A semi-structured guide with open-ended questions was used to explore carers’ experience and perceived acceptability of the intervention, and their ideas to improve the provision. All interviews were conducted remotely through mobile phone or internet communication media, audio-recorded, and transcribed verbatim. We used the thematic analysis framework approach to analyse the data.

Results:

Three key themes were identified: (i) remote, flexible and personalised, (ii) impacts on well-being and outlook on caregiving, and (iii) future implementation and integration with existing services. Overall, carers identified COPe-support as a helpful resource for themselves and for their caregiving role. Participants’ experiences, usage and activity on COPe-support varied a great deal and differed amongst carers of various ages and level of computer literacy.

Conclusions:

Carers found COPe-support a flexible source of knowledge and support from professionals and peers which they can personalise to suit their own needs and convenience. Participants described gaining self-confidence, hope, and a sense of connectivity with others in a similar situation which helped ameliorate isolation and perceived stigma. Most importantly, COPe-support promoted self-care in the carers themselves. While nearly all participants had a positive experience with COPe-support and supported its wider implementation as a beneficial adjunctive support resource for carers in the future, they suggested some improvements. These include having more graphics and visual-audio content materials, improving the navigation and building in more interactional and customisation options to suit various users’ style (e.g. emoji reactions, live online chat, opting in-and-out of updates and choosing frequency of reminders). Any future scale-up of such an intervention should also consider factors pertinent to reaching more carers and integrating the digital resource with other conventional services. Clinical Trial: Current Controlled Trials registration ISRCTN 89563420.