We know the way out: Creating online inflammatory bowel disease communities

摘要

For people with chronic illnesses, managing health conditions can be difficult. With the rising popularity of social media, patient communities have gotten far more sophisticated than earlier, text-based online support groups like message boards or forums. This ethnography examines patient-created and patient-centered online health communities for people with inflammatory bowel disease (IBD). This study has several major findings. First, community leaders use a small subset of social media technology to create multi-platform support communities. Second, communities face several challenges in staying active. Community leaders do not always have time to invest in the community, especially when they struggle with their own health problems, and sometimes conflicts can arise between members, or members can become disconnected from each other because their health situation can vary widely from others' situations. Third, these online communities exist in part as a reaction against existing non-profit and medical professional support structures. While communities try to fill in the emotional support and informational support gaps left by established nonprofits and medical professionals, community leaders do not want their communities to take the place of disease experts. Finally, community members use new media technology in myriad ways to challenge stigma and redefine what it means to live with IBD. This study provides a foundation for further research on the uses of online technology by patients to manage their health, and serves as a guide for more comprehensive research about online communities for other chronic health conditions.