Reasons for Not Participating in Scleroderma Patient Support Groups: A Cross-Sectional Study.

Autor: Gumuchian ST; Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada., Delisle VC; Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada., Peláez S; Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada., Malcarne VL; San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University/University of California, San Diego., El-Baalbaki G; University of Quebec at Montreal, Montreal, Quebec, Canada., Kwakkenbos L; Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada, and Behavioural Science Institute, Clinical Psychology, Radboud University, Nijmegen, The Netherlands., Jewett LR; Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada., Carrier ME; Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada., Pépin M; Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada., Thombs BD; Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada.
Jazyk: angličtina
Zdroj: Arthritis care & research [Arthritis Care Res (Hoboken)] 2018 Feb; Vol. 70 (2), pp. 275-283. Date of Electronic Publication: 2018 Jan 11.
DOI: 10.1002/acr.23220
Abstrakt: Objective: 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 nonattendance among SSc patients in Canada and the US. Exploratory factor analysis (EFA) was conducted, using the software MPlus 7, to group reasons for nonattendance into themes.
Results: A total of 242 people (202 women) with SSc completed the survey. EFA results indicated that a 3-factor model best described the data (χ 2 [150] = 302.7; P < 0.001; Comparative Fit Index = 0.91, Tucker-Lewis Index = 0.88, root mean square error of approximation = 0.07, factor intercorrelations 0.02-0.43). The 3 identified themes, reflecting reasons for not attending SSc support groups were personal reasons (9 items; e.g., already having enough support), practical reasons (7 items; e.g., no local support groups available), and 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 nonattendance. The 2 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.
(© 2017, American College of Rheumatology.)
Databáze: MEDLINE
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