Reasons for not participating in scleroderma patient support groups: a comparison of results from the North American and European scleroderma support group surveys

• Published in: Disability and rehabilitation Vol. 43; no. 9; pp. 1279 - 1286
• Main Authors: Kwakkenbos, Linda, Carboni-Jiménez, Andrea, Carrier, Marie-Eve, Pépin, Mia, Peláez, Sandra, Malcarne, Vanessa L., El-Baalbaki, Ghassan, Thombs, Brett D.
• Format: Journal Article
• Language: English
• Published: England Taylor & Francis 24.04.2021
• Subjects: patient support resources; scleroderma; social support; support groups; Systemic sclerosis; social support; support groups; Systemic sclerosis; scleroderma; patient support resources
• ISSN: 0963-8288; 1464-5165
• DOI: 10.1080/09638288.2019.1656292

Many people with scleroderma rely on peer-led support groups as a coping resource. Reasons for not attending support groups in scleroderma have been investigated only in North American participants. This study assesses reasons for nonattendance in European countries and compares results with previously published North American findings. The same 21-item survey as used in the North American sample assessed possible reasons for not attending scleroderma support groups. Proportions of items rated Important or Very Important were compared between samples. Consistent with the North American survey findings (N = 242), the two items most commonly rated as (Very) Important reasons for nonattendance among 228 European participants were (1) already having enough support (57%), and (2) not knowing of any local scleroderma support groups (58%). Compared to North American non-attenders, European patients were significantly more likely to rate not knowing enough about what happens at support groups (46% vs 19%), not having reliable ways to get to meetings (35% vs 17%), and being uncomfortable sharing experiences with a group (22% vs 11%) as (Very) Important reasons for nonattendance. Improving access to European support groups, providing education about support groups and group leader training may encourage participation. IMPLICATIONS FOR REHABILITATION Rehabilitation professionals might help develop local support groups for people with systemic sclerosis (scleroderma) to address the lack of access to these groups for many patients. The need for transportation and limited local accessibility may also be addressed by implementing online systemic sclerosis support groups. Professionals in the field of rehabilitation may work with people with systemic sclerosis and patient organizations to provide education about support groups to improve support group attendance in Europe.