Experiences of stigma over the lifetime of people with xeroderma pigmentosum: A qualitative interview study in the United Kingdom. (December 2019)

• Record Type: Journal Article
• Authors: Anderson, Rebecca; Walburn, Jessica; Morgan, Myfanwy
• Is Part Of: Journal of health psychology. Volume 24:Number 14(2019)
• Page Start: 2031
• Page End: 2041
• Publication Date: 2019-12
• Subjects: adjustment -- appearance -- chronic illness -- dermatology -- stigma; Clinical health psychology -- Periodicals; 613.019
• DOI: 10.1177/1359105317714643
• Languages: English
• ISSNs: 1359-1053

Abstract

This study explored experiences of stigma in 25 adults with xeroderma pigmentosum. Analysis of semi-structured interviews revealed the changing nature of stigma over the lifetime. Bullying occurred in childhood, whereas adults were questioned about both their photoprotection and skin damage, often resulting in internalised feelings of stigma. Resilience and rejection of feelings of stigma increased with age and experiences of stigma differed across cultures. Findings indicate a need to develop social skills training to help people reject feelings of stigma. Future research should explore perspectives of families, friends and formal institutions and their potential to cause or reduce feelings of stigma.