Background/Purpose: Providing social support is an important component in the management of chronic diseases. In rheumatoid arthritis (RA), peer support is particularly important for coping with the psychosocial aspects of the disease. The aim of this study was to assess the participation, experiences, and perceptions of patients in an online support group for patients with RA using social media.

Methods: A private online support group was created on Facebook including 105 participants who were 18 years or older, residing in the United States or Canada and had been diagnosed with RA for less than 10 years. Each week, a moderator posted a topic for discussion, however, participants could also share other disease-relevant information not directly related to the discussion of the week. We analyzed participants’ posts in the first 5 weeks, their reaction to responses of other participants, and how often and what information was being shared outside the main discussion topics.

Results: Most participants were female and non-Hispanic white (94% and 87.6%, respectively). Nearly two-thirds (65%) were married or lived with a significant other or partner and 62 (59%) had a Bachelor’s or higher degree. The mean age was 52.7 years. Although nearly all participants visited the forum, only an average of about 50 (48%, range 42-62) actively participated in the discussions each week, with the most and least participation recorded respectively in the first and fifth weeks. About 10 percent of participants never contributed to the discussions. Topics discussed included physical challenges, emotional health, self-care, exercise, and socializing. Discussion on physical challenges attracted the highest number of posts (n=311) while self-care had the least (n=120). Other information shared by participants outside the discussion topics included their disease experiences, medications, social lives, other websites on RA, frustrations and messages of encouragement. They also shared pictures of themselves, their families, pets and satirical depictions of their disease experience. Many participants expressed excitement and thankfulness for the social support provided by the group.

Conclusion: Participants were generally enthusiastic about the online support group. Social media based groups may provide an alternative means of facilitating education and peer support that is so often lacking in traditional models of care. However, more research is needed to find better ways to encourage more participation and to sustain participant interest.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/experiences-and-perceptions-of-patients-with-rheumatoid-arthritis-participating-in-an-online-support-group-the-use-of-social-media/