"I Always Vet Things": Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions.
"I Always Vet Things": Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions.
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DOI：
10.2196/jmir.6019
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发表时间：
2016-10-13
影响因子：
7.4
通讯作者：
Sanders C
中科院分区：
文献类型：
--
作者：
Brady E;Segar J;Sanders C
在线社区研究的伦理问题是一个长期争论的问题，许多研究人员认为，开放获取的讨论组是自愿访问的数据，不需要参与者的知情同意才能用于研究目的。然而，有人提出，社区成员对用户生成的在线内容的感知和实际隐私之间存在差异。关于隐私如何在网上体验和制定的研究很少。本研究的目的是解决这一差距，定性探讨个人之间的长期条件在互联网论坛上的隐私的期望。对20名肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）患者和21名1型和2型糖尿病患者进行了半结构化访谈，并使用主题分析进行了分析。参与者通过在线和离线途径招募，即论坛，电子邮件列表，时事通讯和面对面的支持小组。调查结果表明，在线隐私是一个模糊的概念。个人并没有明确区分他们愿意和不愿意在网上分享什么，很明显，这些情况取决于具体情况，并与一些独特的个人因素有关。受访者被认为仔细管理他们如何在论坛上展示自己，过滤和选择他们分享的关于自己的信息，以发展和维护特定的在线角色，同时保持和保护可接受的隐私水平。
The ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggested that there is a discrepancy between the perceived and actual privacy of user-generated online content by community members. There has been very little research regarding how privacy is experienced and enacted online. The objective of this study is to address this gap by qualitatively exploring the expectations of privacy on Internet forums among individuals with long-term conditions. Semistructured interviews were conducted with 20 participants with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 21 participants with type 1 and 2 diabetes mellitus, and were analyzed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups. The findings indicate that privacy online is a nebulous concept. Rather than individuals drawing a clear-cut distinction between what they would and would not be comfortable sharing online, it was evident that these situations were contextually dependent and related to a number of unique and individual factors. Interviewees were seen to carefully manage how they presented themselves on forums, filtering and selecting the information that they shared about themselves in order to develop and maintain a particular online persona, while maintaining and preserving an acceptable level of privacy.
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影响因子：
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作者：
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通讯作者：
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