Background/Purpose: Facebook is the most important social network site, with over 600 million registered users worldwide. Many disease-specific groups exist on Facebook, offering a convenient way to exchange information and support, particularly for patients affected with a rare disease such as systemic lupus erythematosus (SLE). However, no one has explored the content of SLE-related groups on Facebook. We aimed to evaluate the purpose of the SLE-related groups on Facebook, and assess the patterns of use and the information shared on the groups dedicated to support.
Methods: We searched Facebook groups using the term “lupus”, from 10/08/2011 to 01/04/2012. We selected groups related to SLE, operating in English or French, and publicly accessible. We extracted information on the purpose of the group and its administrator, as well as on the number and type of user-generated contributions. We analyzed the content of support groups using a previously developed coding scheme.
Results: We found 173 SLE groups on Facebook containing a total of 42 240 members. Half (49%) of the groups were created for support, while 32% were for disease awareness and 14% for fundraising. The largest group included 30 972 members and was intended for awareness. 3469 members were found in support groups, representing 31% of the overall membership (when excluding the largest group), and the median number of members was 11 (interquartile range, IQR, 39). The most frequent support group locations of origin were the United States (46%), Canada (10%), and United Kingdom (10%). In support groups, the total number of user-generated contributions was 1932, including wall posts (54%), comments (32%), discussion posts (10%), and discussion threads (4%), while the median number of user-generated contributions was 5 (IQR 20).
Conclusion: Support groups represent a substantial proportion of Facebook groups dedicated to SLE. Given their convenience, accessibility, and potential audience, Facebook support groups might represent an efficient way to reach patients with SLE and improve their wellbeing. Further research should evaluate the effect of this type of support groups on patients with SLE.
Disclosure:
E. Vinet,
None;
W. S. Lao,
None;
C. A. Pineau,
None;
A. E. Clarke,
None;
S. Bernatsky,
None.
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/facebook-support-groups-in-systemic-lupus-erythematosus-content-analysis/