Health information work and the enactment of care in couples and families affected by Multiple Sclerosis

Given the considerable emphasis placed on informed choice, the management of health information has become an increasingly important part of living with chronic illness. This paper explores the intra-familial dynamics of managing health information in the context of chronic illness. Drawing on 77 interviews with people affected by Multiple Sclerosis in the UK (patients, partners, family members and close friends), we show how families develop their own idiosyncratic information practices, including the careful, at times strategic, seeking, sharing and withholding of information. We describe how one individual, most commonly either the patient or their partner, often takes primary responsibility for managing growing quantities of health information. Doing this is a complex task, yet its dynamics within the family unit remain invisible and unacknowledged. In this paper we: (a) stress the importance of understanding information management in chronic illness as a collective process across all those affected, patients as well as carers; (b) conceptualise the process of managing health information in this context as ‘health information work’; and (c) analyse it as part of the wider care practices families engage in and as a form of care in its own right

How do carers of people with multiple sclerosis engage with websites containing the personal experiences of other carers and patients?

The Internet supports the peer-to-peer healthcare and the promotion of shared patient narratives. Websites incorporating these narratives or personal accounts are known to offer support to carers of people with multiple sclerosis, but little is known about how carers make choices about what websites to visit and why. In total, 20 carers viewed a range of websites and online personal accounts about multiple sclerosis and subsequently took part in either a group discussion or an individual interview, followed by 2 weeks and 12 months and later by a telephone interview. Data were subjected to thematic analysis with the aim of understanding more about what drives engagement with the stories of others. We found that carers' interpersonal and coping needs shaped their selection of online narratives, and that they were most likely to engage with online personal accounts that provided a good match in terms of experience and perspective

Caregivers’ engagement with online support

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