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Interactions and perceptions of patients with rheumatoid arthritis participating in an online support group.

Abstract：

OBJECTIVE:Peer support is important for psychosocial well-being in patients with rheumatoid arthritis (RA). Our objective was to assess the interactions, engagement, and perceptions of participants in an online support group for patients with RA. METHODS:Participants were 18 years or older, diagnosed with RA within 10 years, and residing in the USA or Canada. All participated in a closed Facebook online support group. Membership was by invitation only, and discussions were visible only to members, moderators, and two research staff. Each week, participants discussed a topic posted by a moderator. They also shared other disease-relevant information beside the topics posted. We assessed participants' engagement and qualitatively analyzed the content of their postings in the first 5 weeks of participation. RESULTS:The group had 90 participants: 94% were female and 83% white. Median age was 54 (24-84) years. Mean number of contributors per week was 50 (range, 42-62); 10% of participants never contributed to the discussions. Participation in discussions declined over time. Over three-quarters of participant posting were about information sharing. Participants shared information on disease experiences, medications, social lives (including pictures of themselves, families, and pets), online resources on RA, frustrations, messages of encouragement, and satirical depictions of their disease experience. Many expressed gratitude for the social support provided. CONCLUSION:Participants were generally enthusiastic and shared disease-related information and personal experiences. Social media groups may provide alternative means of providing education and peer support often lacking in traditional models of care.Key Points• The study examines how patients with rheumatoid arthritis engage in an online support group and the nature of their interactions.• This study reveals that social media platforms could provide viable options or complements to the traditional face-to-face small group patient support system.• It may be necessary to pay special attention to how to ensure a sustained participant interest in online social support group among patients with rheumatoid arthritis.

journal_name

Clin Rheumatol

journal_title

Clinical rheumatology

authors

des Bordes JKA,Foreman J,Westrich-Robertson T,Lopez-Olivo MA,Peterson SK,Hofstetter C,Lyddiatt A,Willcockson I,Leong A,Suarez-Almazor ME

doi

10.1007/s10067-020-04967-y

subject

Has Abstract

pub_date

2020-06-01 00:00:00

pages

1775-1782

issue

eissn

0770-3198

issn

1434-9949

pii

10.1007/s10067-020-04967-y

journal_volume

pub_type

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Interactions and perceptions of patients with rheumatoid arthritis participating in an online support group.