Training and support needs of scleroderma support group facilitators: the North American Scleroderma Support Group Facilitators Survey

Abstract

Purpose: Peer-facilitated support groups are an important resource for people with scleroderma, but little is known about challenges faced by support group facilitators. The objective was to identify training and support needs of scleroderma support group facilitators to inform the development of an educational training program.

Methods: A 32-item survey assessed confidence of support group facilitators to execute tasks necessary for successfully facilitating support groups. Survey items were grouped into seven themes using content analysis.

Results: Eighty North American scleroderma support group facilitators completed the survey. Facilitators were generally confident in their ability to complete tasks related to: (1) Organizing, Structuring, and Facilitating the group; (2) Addressing Individual Member Needs and Diversity of the Group; (3) Helping Members Cope with Grief and Loss; and (4) Attaining and Responding to Member Feedback. They were less confident in their ability to perform tasks related to (1) Managing Difficult Group Dynamics; (2) Promoting and Sustaining the Group; and (3) Balancing Personal and Group Needs.

Conclusion: Results suggest that a training program for scleroderma support group facilitators should address a broad range of topics, including managing difficult group interactions, promotion and maintaining the group, and balancing personal and support group needs.

Implications for Rehabilitation

• Many patients with the rare autoimmune connective tissue disease scleroderma depend on peer-facilitated support groups for disease-related education and peer support, but the lack of training for facilitators is a barrier to forming and sustaining groups.

• Rehabilitation professionals can support the formation and management of local support groups by providing education and support to peer group facilitators or by referring them to national scleroderma organizations who are developing training resources.

• Training for support group facilitators should focus on areas where facilitators were least confident in their abilities, including managing difficult group dynamics, promoting and sustaining the group, and balancing personal and group needs.

Keywords:

• Scleroderma
• systemic sclerosis
• support groups
• self-help groups
• patient support resources
• social support

Acknowledgements

We are grateful to the SSc support group facilitators who took the time to participate in our study. We would like to thank Scleroderma Canada and the Scleroderma Foundation for helping with recruitment. We thank our Scleroderma Support Group Project Advisory Team members for providing us with invaluable input on their experiences of living with scleroderma and facilitating scleroderma support groups. Scleroderma Support Group Project Advisory Team Members include: Kerri Connolly, The Scleroderma Foundation, Danvers, Massachusetts, USA; Laura Dyas, The Scleroderma Foundation Michigan Chapter, Southfield, Michigan, USA; Stephen Elrod, The Scleroderma Foundation Southern California Patient Group, Los Angeles, California, USA; Catherine Fortune, Scleroderma Canada Ontario Patient Group, Ottawa, Ontario, Canada; Karen Gottesman, The Scleroderma Foundation, Los Angeles, California, USA; Anna McCusker, Scleroderma Canada and the Scleroderma Society of Ontario, Hamilton, Ontario, Canada; Michelle Richard, Scleroderma Canada Nova Scotia Patient Group, Halifax, Nova Scotia, Canada; Robert Riggs, The Scleroderma Foundation, Danvers, Massachusetts, USA; Maureen Sauve, Scleroderma Canada and the Scleroderma Society of Ontario, Hamilton, Ontario, Canada; Nancy Stephens, The Scleroderma Foundation Michigan Patient Group, Detroit, Michigan, USA.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the Scleroderma Society of Ontario. V.C.D. was supported by an Arthritis Society Doctoral Award and a Canadian Institutes for Health Research (CIHR) Doctoral Award. S.T.G. was supported by a CIHR Master’s Award and a Fonds de Recherche Santé Québec Master’s Award. B.D.T. was supported by an Investigator Award from the Arthritis Society.