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首页> 外文期刊>Health informatics journal >How do carers of people with multiple sclerosis engage with websites containing the personal experiences of other carers and patients?
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How do carers of people with multiple sclerosis engage with websites containing the personal experiences of other carers and patients?

机译：多发性硬化症患者的看护者如何与包含其他看护者和患者的个人经历的网站互动？

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摘要

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 2weeks and 12months 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.
机译：互联网支持点对点医疗保健并促进共享患者叙述。包含这些叙述或个人帐户的网站可以为多发性硬化症患者的看护者提供支持，但对于看护者如何选择要访问的网站以及为什么选择的原因知之甚少。总共有20位护理人员浏览了有关多发性硬化症的一系列网站和在线个人帐户，随后参加了小组讨论或个人访谈，随后分别是2周和12个月，然后进行了电话访谈。对数据进行了主题分析，目的是更多地了解是什么推动了与他人故事的互动。我们发现，护理人员的人际关系和应对需求决定了他们对在线叙事的选择，并且他们最有可能使用在线个人账户来提供经验和观点方面的良好匹配。

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