title: Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study.
abstract: OBJECTIVE
  Medical advances have transformed the rare disease cystinosis from fatal in childhood to chronic and manageable into adulthood. Disease-specific advocacy groups and interaction via the Internet create opportunities for peer support, part of the changing experience and outcomes of the illness.
  
  
  METHODS
  This study utilized a qualitative grounded theory approach to explore the experience of emerging adults and adults with cystinosis, and their parents. Individuals (n = 49) from 21 families were recruited online and in person for focus groups and/or individual interviews.
  
  
  RESULTS
  Individuals participate in the disease community through comfortability, comparing notes, witnessing/scaling, modeling/mentoring, and going/being public. Participants valued connection to others who shared their diagnosis, and seek to provide support and mentorship to younger patients and their families. Adults with cystinosis perceived themselves as role models but also as examples of potential progression and disability. Going/being public about one's health condition carried emotional and social risks.
  
  
  CONCLUSIONS
  Individuals and families benefit from peer support and mentorship from others who share their illness experience. Participation in the disease community helps individuals (and caregivers) negotiate living with illness and the transition to adulthood. Further research regarding these processes within other disease communities is needed.
authors.affiliation: Quinnipiac University School of Social Work, North Haven, CT, USA, mdoyle@montefiore.org.
authors.forename: Maya
authors.initials: M
authors.lastname: Doyle
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D003554:Cystinosis / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008611:Mentors; D010290:Parents / Q000523:psychology*; D010379:Peer Group; D036301:Qualitative Research; D035583:Rare Diseases / Q000523:psychology*; D012944:Social Support; D014481:United States; D055815:Young Adult