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

Abstract

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 [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.

Keywords:

• Systemic sclerosis
• support groups
• scleroderma
• patient support resources
• social support

Acknowledgements

We are grateful to all of the people with scleroderma that took time to distribute and complete our questionnaire, to the Federation of European Scleroderma Associations and other scleroderma patient organizations throughout Europe and Australia who were instrumental in disseminating the survey, and to our Scleroderma Support Group Project Advisory Team members for providing us with invaluable input on their experiences of living with scleroderma. Scleroderma Support Group Project Advisory Team Members: Kerri Connolly, Director of Programs and Services of the Scleroderma Foundation, Danvers, Massachusetts, USA; Laura Dyas, Executive Director of the Scleroderma Foundation Michigan Chapter, Southfield, Michigan, USA; Stephen Elrod, Southern California Patient Group, Los Angeles, California, USA; Catherine Fortune, Ontario Patient Group, Ottawa, Ontario, Canada; Karen Gottesman, Director of Pharma & Biotech Engagement Scleroderma Foundation, Los Angeles, California, USA; Anna McCusker, Executive Director of Scleroderma Canada and the Scleroderma Society of Ontario, Hamilton, Ontario, Canada; Michelle Richard, President of Scleroderma Canada, Halifax, Nova Scotia, Canada; Robert Riggs, Chief Executive Officer of the Scleroderma Foundation, Danvers, Massachusetts, USA; Maureen Sauve, VP Advocacy and Public Relations of Scleroderma Canada and the Scleroderma Society of Ontario, Hamilton, Ontario, Canada; Nancy Stephens, 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 funding from the Scleroderma Society of Ontario. Ms. Stephanie Gumuchian was supported by a Fonds de Recherche Santé Québec Master’s Award and by funding from McGill University, Montréal, Québec, Canada. Ms. Vanessa Delisle was supported by a Doctoral Research Award from the Arthritis Society. Dr Kwakkenbos was supported by a CIHR Banting Postdoctoral Fellowship. Dr Thombs was supported by an Investigator Salary Award from the Arthritis Society.