Alexandra Papoutsaki
Samuel So
Daniel A. Epstein
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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.
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Index Terms
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