Understanding Delivery of Collectively Built Protocols in an Online Health Community for Discontinuation of Psychiatric Drugs
Understanding Delivery of Collectively Built Protocols in an Online Health Community for Discontinuation of Psychiatric Drugs
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DOI：
10.1145/3479564
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发表时间：
2021-10
影响因子：
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通讯作者：
Alexandra Papoutsaki;S. So;Georgia Kenderova;Bryan Shapiro;Daniel A. Epstein
中科院分区：
文献类型：
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作者：
Alexandra Papoutsaki;S. So;Georgia Kenderova;Bryan Shapiro;Daniel A. Epstein
人们经常求助于在线健康社区（OHC），以获得有关其特定医疗条件和健康相关问题的同行支持。随着时间的推移，OHC的核心成员对他们所支持的医疗条件建立了共同的理解。虽然以前的工作研究了个人如何不同的功能，在积极的意义建构模式相比，习惯模式，很少有人知道OHC如何传播他们的意见，一旦他们的核心成员主要在习惯模式。我们定性地观察这样一个OHC，“幸存的抗抑郁药”，以了解集体建立的协议是如何传播的重要领域停止精神药物。精神科药物被广泛用于治疗精神健康诊断，但在某些情况下，临床上建议停药。不幸的是，有些人在停药后会出现严重的戒断症状，即使是在遵循医疗建议的情况下，也会转向OHC寻求支持。我们发现，集体建立的协议类似于医疗建议，并提供了一个自上而下的方式，与工作人员的信息支持的主要来源。相比之下，所有成员都提供情感支持，并就医疗系统的导航交换意见，而许多人则表达了对医学界和制药公司的不信任。我们还讨论了OHC在医疗系统之外提供建议的影响，并就OHC如何与医疗保健提供者合作以推进科学知识和更好地支持患有疾病的人提供建议。
People often turn to online health communities (OHCs) for peer support on their specific medical conditions and health-related concerns. Over time, core members in OHCs build a shared understanding of the medical conditions they support. Although prior work has studied how individuals function differently in active sensemaking mode compared to habitual mode, little is known about how OHCs disseminate their advice once their core members operate primarily in habitual mode. We qualitatively observe one such OHC, 'Surviving Antidepressants', to understand how collectively-built protocols are disseminated in the important domain of discontinuing psychiatric drugs. Psychiatric drugs are widely prescribed to treat mental health diagnoses, but, in certain cases, discontinuation might be clinically advisable. Unfortunately, some people experience severe withdrawal symptoms upon discontinuation, even when following medical advice, and thus turn to OHCs for support. We find that collectively-built protocols resemble medical advice and are delivered in a top-down fashion, with staff members being the primary source of informational support. In contrast, all members provide emotional support and exchange advice on navigating the medical system, while many express their distrust of the medical community and pharmaceutical companies. We also discuss the implications of OHCs offering advice outside of the medical system and offer suggestions for how OHCs can collaborate with healthcare providers to advance scientific knowledge and better support people living with medical conditions.