Reasons for attending support groups and organizational preferences: the European scleroderma support group members survey

摘要

Purpose: The objectives were to Identify reasons why patients attend scleroderma support groups and to ascertain preferences for how meetings are best organized. 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 [v2(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.