How do online patient support communities affect the experience of inflammatory bowel disease? An online survey

摘要

Objective To explore how participation in an online support community may impact upon the experience of inflammatory bowel disease (IBD). Design An online survey. Setting Study participants recruited through 35 IBD online communities. Participants A total of 249 males and females aged 16–69 years, living with either Crohn’s disease (65.9%) or ulcerative colitis (26.1%) or awaiting formal diagnosis (8%). Results Patients reported being members for an average of two years, with the majority accessing the community on a daily (46.9%) or weekly (40%) basis. Spending on average four hours per week online, approximately two-thirds of members posted between one and five messages per week. Members joined to find others in a similar situation and to obtain and share information and emotional support. Through participation members accessed a wealth of knowledge about all aspects of living with IBD and this was helpful in terms of accepting their illness and learning to manage it. The community also helped members see their illness more positively as well as contributing to an improvement in subjective wellbeing. However, some negatives aspects were noted. Conclusions Online support communities may provide a useful shared space through which IBD patients may seek and provide both informational and emotional support. Many of these benefits may not be available through traditional healthcare. Whilst online support communities may be beneficial for those who choose to participate in them, they are not without limitations. Health professionals should be aware of the potential benefits and limitations of online communities.