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Support Groups in Scleroderma

  • Danielle B. Rice
  • Brett D. ThombsEmail author
Scleroderma (J Varga, Section Editor)
  • 42 Downloads
Part of the following topical collections:
  1. Topical Collection on Scleroderma

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.

Keywords

Scleroderma Systemic sclerosis Support groups Rare disease Social support 

Notes

Funding Information

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.

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no conflicts of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

References

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

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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Lady Davis Institute of the Jewish General HospitalMontréalCanada
  2. 2.Department of PsychologyMcGill UniversityMontrealCanada
  3. 3.Department of PsychiatryMcGill UniversityMontrealCanada
  4. 4.Department of Epidemiology, Biostatistics and Occupational HealthMcGill UniversityMontrealCanada
  5. 5.Department of MedicineMcGill UniversityMontrealCanada
  6. 6.Department of Educational and Counselling PsychologyMcGill UniversityMontrealCanada
  7. 7.Department of Biomedical Ethics UnitMcGill UniversityMontrealCanada

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