The Scleroderma Support group Leader EDucation (SSLED) Program

Many people with the rare autoimmune disease scleroderma rely on support groups to cope with their illness. For many scleroderma patients, however, support groups are not available in their area or cannot be sustained. To address this problem, the Scleroderma Patient-centered Intervention Network (SPIN) and Scleroderma Canada developed a videoconference-based training program for scleroderma patient support group leaders, the Scleroderma Support group Leader EDucation (SPIN-SSLED) Program. The goal of this 3-month program is to provide information and resources to help leaders feel more confident and supported in their role. To test the program, the intern will coordinate a clinical trial in which 180 support group leaders are randomly assigned to receive the program or to a wait-list comparison group. If effective, Scleroderma Canada will use the SPIN-SSLED Program to improve the effectiveness of existing support groups and train new leaders to increase the number of available groups in Canada.

Intern: 
Shadi Gholizadeh
Faculty Supervisor: 
Brett Thombs
Project Year: 
2019
Province: 
Quebec
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