Background/Purpose: High perceived social support is associated with better quality of life and lower rates of depression for persons with rheumatoid arthritis (Minnock, et al 2003 and Zyrianova, et al, 2006), yet pain, fatigue and the invisible nature of the disease can lead to social isolation. Disease-specific Facebook communities have become thriving, accessible platforms for information sharing and social support.  However, little is understood about the content of patient engagement on this medium. 

Methods: The 4 largest patient-driven Facebook community pages devoted to rheumatoid arthritis were identified. Text from 10 sequential “wall posts” from May-June 2013 by members each community and ensuing discussion posts were thematically coded and aggregated into a database. Multiple codes were allowed for each post.  Members self-identified as persons with rheumatoid arthritis, loved ones, caregivers, or did not specify.  Providing advice, sharing a personal story and providing support were predominant themes.  Content coded as “providing advice” and “personal story” was further categorized based on areas of occupation according to the Occupational Therapy Practice Framework. Patient-provider interactions were coded under “Health Management and Maintenance” and then further sub-categorized to be of relevance to rheumatology professionals. 

Results: 1066 posts were thematically coded. In 73% of posts, information was provided (44% of which involved a personal story, 29% of which involved advice). In 20% of posts, support was provided.  Instrumental activities of daily living (such as home, medical and financial management) were the most frequently discussed topics. Health management was the most frequently discussed instrumental activity of daily living (which included pain management, medication management, nutrition and fitness, and patient-provider interactions).  

Conclusion: Participants primarily use rheumatoid arthritis-specific Facebook pages to share stories, advice and support about health management and maintenance.  While this medium allows for many potential positive effects such as increased social support and the sharing of effective daily living strategies, potential drawbacks include frequent medical advice given by individuals with unknown qualifications. It would behoove healthcare professionals to understand and address the role of this medium in social participation for their clients.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/from-social-support-to-information-sharing-how-are-persons-with-rheumatoid-arthritis-using-disease-specific-facebook-communities-a-content-analysis/