title: Reasons for non-participation in scleroderma support groups.
abstract: Peer-led support groups are an important resource for people living with many rare diseases, including scleroderma (systemic sclerosis, SSc). Little is known, however, about the accessibility of SSc support groups and factors that may discourage people from participating in these groups. The objective of this study was to identify reasons why people with SSc do not participate in SSc support groups.
  
  
  
  Canadians with SSc were recruited to complete the Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities. Data from respondents who answered the question "Have you participated in SSc support groups?" with "No" were analyzed. Frequencies of participants who responded (1) I'm not interested, (2) None are easily available, and (3) Other (please specify) were tallied. A content analysis approach was used to code the open-ended responses to this question.
  
  
  
  A total of 280 respondents provided a reason for non-participation in SSc support groups. Key reasons for not participating in support groups included: (1) Not interested or no perceived need (36%); (2) No local support group available (35%); (3) Lack of awareness of the existence of SSc support groups (13%); (4) Practical barriers (6%); (5) Emotional factors (4%); (6) Uncertainty about whether to attend (4%); and (7) Negative perceptions about support groups (3%).
  
  
  
  SSc organizations may be able to address current limitations in the accessibility and effectiveness of SSc support groups by implementing online support groups, as well as by providing support group leaders training to help establish and sustain successful SSc support groups.
authors.affiliation: Department of Educational and Counselling Psychology, McGill University; and Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Quebec, Canada.
authors.forename: Vanessa C
authors.initials: VC
authors.lastname: Delisle
authors.affiliation: Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Québec, Canada.
authors.forename: Stephanie T
authors.initials: ST
authors.lastname: Gumuchian
authors.affiliation: Department of Educational and Counselling Psychology, McGill University, Montréal, Quebec, Canada.
authors.forename: Sandra
authors.initials: S
authors.lastname: Pelaez
authors.affiliation: Department of Psychology, San Diego State University; and San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University/University of California, San Diego, CA, USA.
authors.forename: Vanessa L
authors.initials: VL
authors.lastname: Malcarne
authors.affiliation: Department of Psychology, Université du Québec à Montréal, Montréal, Québec, Canada.
authors.forename: Ghassan
authors.initials: G
authors.lastname: El-Baalbaki
authors.affiliation: Department of Educational and Counselling Psychology, McGill University; and Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Quebec, Canada.
authors.forename: Annett
authors.initials: A
authors.lastname: Körner
authors.affiliation: Department of Medicine, McGill University; and Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Quebec, Canada.
authors.forename: Marie
authors.initials: M
authors.lastname: Hudson
authors.affiliation: Department of Medicine, McGill University; and Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Quebec, Canada.
authors.forename: Murray
authors.initials: M
authors.lastname: Baron
authors.affiliation: Depts. of Educational and Counselling Psychology; Epidemiology, Biostatistics, and Occupational Health; Medicine; Psychiatry; Psychology; School of Nursing, McGill Univ.; and Lady Davis Inst.for Medical Research, Jewish General Hospital, Montréal, Canada.
authors.forename: Brett D
authors.initials: BD
authors.lastname: Thombs
mesh_terms: D000328:Adult; D000368:Aged; D001364:Awareness; D002170:Canada; D004644:Emotions; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006297:Health Services Accessibility; D006801:Humans; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance; D010379:Peer Group; D010465:Perception; D012595:Scleroderma, Systemic / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D012657:Self-Help Groups; D011795:Surveys and Questionnaires