How do carers of people with multiple sclerosis engage with websites containing the personal experiences of other carers and patients?. (December 2016)

• Record Type: Journal Article
• Authors: Sillence, Elizabeth; Hardy, Claire; Briggs, Pam; Harris, Peter R
• Is Part Of: Health informatics journal. Volume 22:Number 4(2016:Dec.)
• Page Start: 1045
• Page End: 1054
• Publication Date: 2016-12
• Subjects: carers -- ehealth -- Internet -- multiple sclerosis -- peer-to-peer healthcare; Medical informatics -- Periodicals; 610.285
• DOI: 10.1177/1460458215607938
• Languages: English
• ISSNs: 1460-4582

Abstract

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.