TY - JOUR
T1 - Interactions and perceptions of patients with rheumatoid arthritis participating in an online support group
AU - des Bordes, Jude K.A.
AU - Foreman, Jessica
AU - Westrich-Robertson, Tiffany
AU - Lopez-Olivo, Maria A.
AU - Peterson, Susan K.
AU - Hofstetter, Catherine
AU - Lyddiatt, Anne
AU - Willcockson, Irmgard
AU - Leong, Amye
AU - Suarez-Almazor, Maria E.
N1 - Funding Information:
This work was supported by a grant from the Rheumatology Research Foundation (Effects of Social Networking on Chronic Disease Management in Arthritis, Principal Investigator: M. Suarez-Almazor). Support was also provided, in part, by the Assessment, Intervention, and Measurement (AIM) Shared Resource through a Cancer Center Support Grant (CA16672, PI: P. Pisters, MD Anderson Cancer Center), from the National Cancer Institute, National Institutes of Health, and through the Duncan Family Institute for Cancer Prevention and Risk Assessment.
Funding Information:
We are thankful to Dr. Kaleb Michaud and Rebecca Schumacher for their assistance recruiting patients through the National Databank for Rheumatic Diseases and to Ms. Eliuth H. Lopez-Olivo who developed the design, graphics, and logos for the Facebook group website. Finally, we would like to express our unconditional gratitude to all the participants in the study who shared their experiences and beliefs to help us better understand their journey through life with RA. This work was supported by a grant from the Rheumatology Research Foundation (Effects of Social Networking on Chronic Disease Management in Arthritis, Principal Investigator: M. Suarez-Almazor). Support was also provided, in part, by the Assessment, Intervention, and Measurement (AIM) Shared Resource through a Cancer Center Support Grant (CA16672, PI: P. Pisters, MD Anderson Cancer Center), from the National Cancer Institute, National Institutes of Health, and through the Duncan Family Institute for Cancer Prevention and Risk Assessment.
Publisher Copyright:
© 2020, International League of Associations for Rheumatology (ILAR).
PY - 2020/6/1
Y1 - 2020/6/1
N2 - 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.
AB - 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.
KW - Facebook
KW - Rheumatoid arthritis
KW - Social support group
UR - http://www.scopus.com/inward/record.url?scp=85078897876&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85078897876&partnerID=8YFLogxK
U2 - 10.1007/s10067-020-04967-y
DO - 10.1007/s10067-020-04967-y
M3 - Article
C2 - 32006180
AN - SCOPUS:85078897876
SN - 0770-3198
VL - 39
SP - 1775
EP - 1782
JO - Clinical Rheumatology
JF - Clinical Rheumatology
IS - 6
ER -