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

Sillence, Elizabeth, Hardy, Claire, Briggs, Pamela and Harris, Peter (2016) How do carers of people with multiple sclerosis engage with websites containing the personal experiences of other carers and patients? Health Informatics Journal, 22 (4). pp. 1045-1054. ISSN 1741-2811

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Abstract

The Internet supports 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 (MS), but little is known about how carers make choices about what websites to visit and why. Twenty carers viewed a range of websites and online personal accounts about MS and subsequently took part in either a group discussion or an individual interview, followed 2 weeks and 12 months later by a telephone interview. Data were subject 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.

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