Support Groups in Scleroderma

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Date: Apr. 2019
From: Current Rheumatology Reports(Vol. 21, Issue 4)
Publisher: Springer
Document Type: Report
Length: 301 words

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Abstract :

Byline: Danielle B. Rice (1,2), Brett D. Thombs (1,2,3,4,5,6,7) Keywords: Scleroderma; Systemic sclerosis; Support groups; Rare disease; Social support Abstract: Purpose of Review This review presents evidence on support group effectiveness in common diseases, research on support groups in systemic sclerosis (SSc), and work underway by the Scleroderma Patient-centered Intervention Network in collaboration with patient organizations to train SSc support group leaders in order to improve support group access and the experiences of support groups for members and leaders. Recent Findings Giving and receiving emotional and practical support from others with SSc is an important reason that individuals with SSc attend support groups, but many patients cannot access support groups. SSc support group leaders report confidence in their ability to facilitate groups, but are less confident in tasks such as managing group dynamics and sustaining the group. Summary The Scleroderma Support group Leader EDucation (SPIN-SSLED) Program was developed to provide training to support group leaders and was recently tested through a feasibility trial. A full-scale trial will commence in 2019. Author Affiliation: (1) 0000 0000 9401 2774, grid.414980.0, Lady Davis Institute of the Jewish General Hospital, 4333 Cote-Sainte-Catherine Road,, Montreal, Quebec, H3T 1E4, Canada (2) 0000 0004 1936 8649, grid.14709.3b, Department of Psychology, McGill University, Montreal, Canada (3) 0000 0004 1936 8649, grid.14709.3b, Department of Psychiatry, McGill University, Montreal, Canada (4) 0000 0004 1936 8649, grid.14709.3b, Department of Epidemiology, Biostatistics and Occupational Health, McGill University, Montreal, Canada (5) 0000 0004 1936 8649, grid.14709.3b, Department of Medicine, McGill University, Montreal, Canada (6) 0000 0004 1936 8649, grid.14709.3b, Department of Educational and Counselling Psychology, McGill University, Montreal, Canada (7) 0000 0004 1936 8649, grid.14709.3b, Department of Biomedical Ethics Unit, McGill University, Montreal, Canada Article History: Registration Date: 01/02/2019 Online Date: 21/02/2019 Article note: This article is part of the Topical Collection on Scleroderma

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Gale Document Number: GALE|A575211695