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Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study

  • Maya Doyle
Original Research Article

Abstract

Purpose

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.

Implications

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.

Keywords

Focus Group Primary Biliary Cirrhosis Cysteamine Adult Participant Cystinosis 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Notes

Conflict of interest

None.

Supplementary material

40271_2014_85_MOESM1_ESM.docx (23 kb)
Supplementary material 1 (DOCX 22 kb)

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Copyright information

© Springer International Publishing Switzerland 2014

Authors and Affiliations

  1. 1.Quinnipiac University School of Social WorkNorth HavenUSA
  2. 2.Division of Pediatric NephrologyChildren’s Hospital at MontefioreBronxUSA

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