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Psychosocial Impact of Familial Adenomatous Polyposis on Young Adults: A Qualitative Study
Author(s) -
Mireskandari Shab,
Sangster Jennifer,
Meiser Bettina,
Thewes Belinda,
Groombridge Claire,
Spigelman Allan,
Andrews Lesley
Publication year - 2009
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1007/s10897-009-9231-2
Subject(s) - psychosocial , familial adenomatous polyposis , genetic counseling , medicine , stressor , qualitative research , young adult , family medicine , clinical psychology , gerontology , psychiatry , colorectal cancer , social science , cancer , sociology , biology , genetics
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.