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Reasons for Not Participating in Scleroderma Patient Support Groups: A Cross-Sectional Study
Stephanie T Gumuchian1, Vanessa C Delisle1, Sandra Peláez1
1Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada.
Arthritis Care & Research
|February 21, 2017
Summary
Many scleroderma patients don't attend support groups due to personal reasons, lack of awareness, or practical barriers. Addressing these barriers could improve access to valuable SSc peer support.
Area of Science:
- Rheumatology
- Patient Support
- Health Services Research
Background:
- Peer-led support groups are vital for scleroderma (systemic sclerosis; SSc) patients.
- Barriers to participation in SSc support groups are not well understood.
Purpose of the Study:
- To identify and categorize the reasons why individuals with SSc do not participate in support groups.
Main Methods:
- A 21-item survey was administered to 242 SSc patients in Canada and the US.
- Exploratory factor analysis (EFA) was used to identify themes of nonattendance.
Main Results:
- Three main themes emerged: personal reasons (e.g., sufficient existing support), practical reasons (e.g., lack of local groups), and beliefs about support groups (e.g., negativity).
- Top reasons for nonattendance included having adequate support elsewhere and not knowing about available SSc support groups.
Conclusions:
- SSc organizations can enhance participation by offering online groups, improving patient information dissemination, and training facilitators.
- Addressing accessibility and patient concerns is key to maximizing the benefits of SSc support groups.
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