Psychosocial Impact of Familial Adenomatous Polyposis on Young Adults: A Qualitative Study | FAPvoice

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Psychosocial Impact of Familial Adenomatous Polyposis on Young Adults: A Qualitative Study

key information

source: Journal of genetic counseling

year: 2009

authors: Shab Mireskandari, Jennifer Sangster, Bettina Meiser, Belinda Thewes, Allan Spigelman, Lesley Andrews, Claire Groombridge

summary/abstract:

The aim of this study was to explore in detail the psychosocial impact of either having familial adenomatous polyposis (FAP) or being at risk for FAP amongst young adults. In-depth interviews were conducted with eleven individuals aged 18-35 with a clinical or genetic diagnosis of, or at risk of developing FAP. While being at risk did not seem to have a major psychosocial impact upon clinically unaffected participants, clinically affected individuals discussed a number of major stressors including issues in relation to changes in body image and physical functioning as a result of surgery, concerns about discussing FAP with new partners, difficulties in relation to childbearing decision-making, and impact on employment. Genetic counseling was described as being highly effective in providing support, but most participants were not aware of any other support services. Providing longer-term support through ongoing genetic counseling appears necessary to adequately address the ongoing challenges faced by young adults who are dealing with FAP.

organisation: Prince of Wales Hospital

DOI: 10.1007/s10897-009-9231-2

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