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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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Join, Stay or Go?: A Closer Look at Members' Life Cycles in Online Health Communities
Online health communities (OHCs) have become important resources from which members can obtain social support. Since most benefits of OHCs are provided by its members, it is crucial that OHCs maintain a critical mass of active members. This paper examines temporal changes in members' participation in a cancer-orientedOHC, focusing on the changes in members' motivations and behavior as they transition from newcomers to other roles or when they ultimately leave the community. Our work used mixed methods, combining behavioral log analysis, automated content analysis, surveys and interviews. We found that shifts in members' motivations seemed to be driven by two sources: the internal dynamics common to becoming a member of most online communities and the external needs associated with their cancer journey. When members' disease-driven needs for support decreased, most members quit the site. The motivations of those who stayed shifted from receiving support to providing it to others in the community. As in many online communities, old-timers contributed the vast majority of content. However, they encountered challenges that threatened their commitment, including negative emotions related to other members' deaths, which led them to take leaves of absence from the community or to drop out permanently. Implications for the motivation changes ofOHC members are discussed.
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- PAR ID:
- 10601740
- Publisher / Repository:
- Association for Computing Machinery (ACM)
- Date Published:
- Journal Name:
- Proceedings of the ACM on Human-Computer Interaction
- Volume:
- 5
- Issue:
- CSCW1
- ISSN:
- 2573-0142
- Format(s):
- Medium: X Size: p. 1-22
- Size(s):
- p. 1-22
- Sponsoring Org:
- National Science Foundation
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