Caregivers’ engagement with online support

Barraclough, Johanna and Lobban, Fiona and Sellwood, Bill (2021) Caregivers’ engagement with online support. PhD thesis, Lancaster University.

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Abstract

This thesis is comprised of a research paper, a literature review and a critical appraisal of the research process. The research paper investigates the use of a digital health intervention (DHI) by relatives of people with psychosis or bipolar disorder, with the aim of identifying the factors which impact their engagement. Individual interviews were conducted with participants, recruited through NHS Early Intervention in Psychosis services in the UK. An inductive thematic analysis resulted in three themes: (i) motivation to understand and be understood; (ii) personal relevance sustains engagement; and (iii) usability and interaction enhance engagement. The findings indicated that clinical support from a trusted source was critical to engagement. Participants also appreciated the opportunity to relate to relatives facing similar challenges in order to access support and learn new strategies. This implied that the development and implementation of DHIs should include input from caregivers to ensure content and delivery reflect the needs of the intended user. The literature review identified and synthesised the findings of 34 qualitative studies about how caregivers of people with physical or mental health conditions engaged with online peer support. Thematic synthesis resulted in two overarching themes which represent the function of online peer support for the participants: (i) meeting caregivers’ needs for a new type of sustaining friendship; and (ii) creating a space to express uncomfortable emotions. Caregivers’ engagement with flexible, emotionally supportive and reciprocal interaction online was underpinned by experiential similarity. Online peer support offered a safe space to express emotions away from the caregiving relationship and has potential to meet caregivers’ needs for support. The critical appraisal reflects on the findings of the research paper and the literature review, focussing on limitations; opportunities for future research; and the impact of reflexivity on the research process.