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Reasons for non-participation in scleroderma support groups.

Vanessa C Delisle1, Stephanie T Gumuchian2, Sandra Pelaez3

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Many individuals with scleroderma (SSc) do not participate in support groups due to lack of interest, availability, or awareness. Addressing these barriers could improve access to vital SSc patient support resources.

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Area of Science:

  • Rheumatology
  • Patient Advocacy
  • Rare Diseases

Background:

  • Peer-led support groups are crucial for individuals with rare diseases like scleroderma (systemic sclerosis, SSc).
  • Limited understanding exists regarding the accessibility and participation barriers for SSc support groups.

Purpose of the Study:

  • To identify the primary reasons why individuals with SSc do not participate in available support groups.
  • To inform strategies for enhancing SSc support group engagement.

Main Methods:

  • A Canadian Scleroderma Patient Survey was administered to individuals with SSc.
  • Analysis focused on respondents who indicated non-participation in SSc support groups, categorizing their stated reasons.

Main Results:

  • The most common reasons for non-participation were lack of interest/perceived need (36%) and unavailability of local groups (35%).
  • Other significant factors included lack of awareness (13%), practical barriers (6%), emotional factors (4%), and uncertainty (4%).

Conclusions:

  • Scleroderma patient organizations can improve support group accessibility by developing online options.
  • Training for support group leaders is recommended to enhance the establishment and sustainability of effective SSc support groups.