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Support Groups in Scleroderma

  • Scleroderma (J Varga, Section Editor)
  • Published:
Current Rheumatology Reports Aims and scope Submit manuscript

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.

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Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

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Funding

Ms. Rice is supported by a Health Systems Impact Fellowship through the Canadian Institutes for Health Research (CIHR). Dr. Thombs is supported by Fonds de recherche du Québec—Santé researcher salary award.

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Authors and Affiliations

  1. Lady Davis Institute of the Jewish General Hospital, 4333 Côte-Sainte-Catherine Road,, Montréal, Québec, H3T 1E4, Canada

    Danielle B. Rice & Brett D. Thombs

  2. Department of Psychology, McGill University, Montreal, Canada

    Danielle B. Rice & Brett D. Thombs

  3. Department of Psychiatry, McGill University, Montreal, Canada

    Brett D. Thombs

  4. Department of Epidemiology, Biostatistics and Occupational Health, McGill University, Montreal, Canada

    Brett D. Thombs

  5. Department of Medicine, McGill University, Montreal, Canada

    Brett D. Thombs

  6. Department of Educational and Counselling Psychology, McGill University, Montreal, Canada

    Brett D. Thombs

  7. Department of Biomedical Ethics Unit, McGill University, Montreal, Canada

    Brett D. Thombs

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  1. Danielle B. Rice
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Correspondence to Brett D. Thombs.

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Rice, D.B., Thombs, B.D. Support Groups in Scleroderma. Curr Rheumatol Rep 21, 9 (2019). https://doi.org/10.1007/s11926-019-0808-y

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