title: Reasons for Not Participating in Scleroderma Patient Support Groups: A Cross-Sectional Study.
abstract: 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.
  
  
  
  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.
  
  
  
  A total of 242 people (202 women) with SSc completed the survey. EFA results indicated that a 3-factor model best described the data (χ2[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.
  
  
  
  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.
authors.affiliation: Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada.
authors.forename: Stephanie T
authors.initials: ST
authors.lastname: Gumuchian
authors.affiliation: Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada.
authors.forename: Vanessa C
authors.initials: VC
authors.lastname: Delisle
authors.affiliation: Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada.
authors.forename: Sandra
authors.initials: S
authors.lastname: Peláez
authors.affiliation: San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University/University of California, San Diego.
authors.forename: Vanessa L
authors.initials: VL
authors.lastname: Malcarne
authors.affiliation: University of Quebec at Montreal, Montreal, Quebec, Canada.
authors.forename: Ghassan
authors.initials: G
authors.lastname: El-Baalbaki
authors.affiliation: 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.
authors.forename: Linda
authors.initials: L
authors.lastname: Kwakkenbos
authors.affiliation: Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada.
authors.forename: Lisa R
authors.initials: LR
authors.lastname: Jewett
authors.affiliation: Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada.
authors.forename: Marie-Eve
authors.initials: ME
authors.lastname: Carrier
authors.affiliation: Lady Davis Institute of the Jewish General Hospital, Montreal, Quebec, Canada.
authors.forename: Mia
authors.initials: M
authors.lastname: Pépin
authors.affiliation: Lady Davis Institute of the Jewish General Hospital and McGill University, Montreal, Quebec, Canada.
authors.forename: Brett D
authors.initials: BD
authors.lastname: Thombs
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002170:Canada; D003430:Cross-Sectional Studies; D005195:Family Relations; D005260:Female; D019538:Health Care Surveys; D007722:Health Knowledge, Attitudes, Practice; D006297:Health Services Accessibility; D006801:Humans; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care; D010379:Peer Group; D012595:Scleroderma, Systemic / Q000175:diagnosis / Q000523:psychology / Q000628:therapy*; D012657:Self-Help Groups; D012944:Social Support; D014481:United States; D055815:Young Adult