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多发性硬化症患者的护理人员如何参与包含其他护理人员和患者个人经历的网站?

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

作者信息

Sillence Elizabeth, Hardy Claire, Briggs Pam, Harris Peter R

机构信息

Northumbria University, UK

Kings College London, UK.

出版信息

Health Informatics J. 2016 Dec;22(4):1045-1054. doi: 10.1177/1460458215607938. Epub 2015 Oct 11.

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.

摘要

互联网支持点对点医疗保健以及促进患者故事的分享。据了解,包含这些故事或个人经历的网站为多发性硬化症患者的护理人员提供支持,但对于护理人员如何选择访问哪些网站以及原因却知之甚少。共有20名护理人员浏览了一系列关于多发性硬化症的网站和在线个人经历,随后参加了小组讨论或个人访谈,之后在2周和12个月时又进行了电话访谈。对数据进行了主题分析,目的是更深入地了解是什么促使人们参与他人的故事。我们发现,护理人员的人际需求和应对需求影响了他们对在线故事的选择,并且他们最有可能参与那些在经验和观点方面匹配度高的在线个人经历。

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