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Methods: The survey included 30-items on reasons for attending and nine items on organizational preferences. Patients were recruited through European patient organizations. Exploratory factor analysis was used to group reasons for attendance thematically.
Results: About 213 scleroderma patients (192 women) completed the survey. A three-factor model best described reasons for attending [χ2(348)?=?586.1, p?<?0.001; Comparative Fit Index?=?0.98; Tucker Lewis Index?=?0.97; Root Mean Square Error of Approximation?=?0.06] with themes that included: (1) obtaining interpersonal and social support, (2) learning about treatment and symptom management strategies, and (3) discussing other aspects of scleroderma. Among organizational preferences, respondents emphasized that meetings should include educational aspects and the opportunity to share information and support.
Conclusion: People with scleroderma attend support groups to give and obtain social support and for education about managing their disease and other aspects of living with scleroderma. Support groups should be structured to facilitate both educational and informational aspects and to provide opportunities for sharing and support between members.
- Implications for rehabilitation
Local peer-led support groups are an important support and informational resource for patients living with scleroderma.
People with scleroderma attend support groups in order to: (1) obtain interpersonal and social support, (2) learn about disease treatment and symptom management strategies, and (3) discuss other aspects of living with scleroderma outside of symptom management.
Most support group members prefer groups with a trained facilitator, that include family members or loved ones in the groups, that include between 11and 20 members, that last between 1 and 2?h, and that meet once every 1–3 months.
Rehabilitation professionals can support the formation and management of local support groups or can refer patients to national scleroderma patient organizations for information on support groups that they may be able to access.
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.