Reasons for not participating in scleroderma patient support groups: A cross-sectional study

Abstract

Item does not contain fulltextObjective: Peer-led support groups are an important resource for many people with scleroderma (systemic sclerosis; SSc). Little is known, however, about barriers to participation. The objective of this study was to identify reasons why some people with SSc do not participate in SSc support groups. Methods: A 21-item survey was used to assess reasons for non-attendance among SSc patients in Canada and the United States. Exploratory factor analysis (EFA) was conducted using the software MPlus 7 to group reasons for non-attendance into themes. Results: A total of 242 (202 women) people with SSc completed the survey. EFA results indicated that a three-factor model best described the data (X2(150)=302.7, p < 0.001; CFI=0.91; TLI=0.88; RMSEA=0.07; factor intercorrelations 0.02 to 0.43). The three identified themes, reflecting reasons for not attending SSc support groups, included: (1) Personal Reasons (9 items; e.g., already having enough support), (2) Practical Reasons (7 items; e.g., no local support groups), and (3) Beliefs about Support Groups (5 items; e.g., support groups are too negative). On average, respondents rated 4.9 items as Important or Very Important reasons for non-attendance. The two items most commonly rated as Important or Very Important were (1) Already having enough support from family, friends, or others, and (2) Not knowing of any SSc support groups offered in my area. Conclusion: SSc organizations may be able to address limitations in accessibility and concerns about SSc support groups by implementing online support groups, better informing patients about support group activities, and training support group facilitators.9 p