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; patient support resources; self-help groups; social support; support groups; systemic sclerosis.