title: Psychosocial impact of familial adenomatous polyposis on young adults: a qualitative study.
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.
authors.affiliation: Department of Medical Oncology, Prince of Wales Hospital, Randwick, NSW, Sydney, Australia.
authors.forename: Shab
authors.initials: S
authors.lastname: Mireskandari
authors.forename: Jennifer
authors.initials: J
authors.lastname: Sangster
authors.forename: Bettina
authors.initials: B
authors.lastname: Meiser
authors.forename: Belinda
authors.initials: B
authors.lastname: Thewes
authors.forename: Claire
authors.initials: C
authors.lastname: Groombridge
authors.forename: Allan
authors.initials: A
authors.lastname: Spigelman
authors.forename: Lesley
authors.initials: L
authors.lastname: Andrews
mesh_terms: D000223:Adaptation, Psychological; D011125:Adenomatous Polyposis Coli / Q000523:psychology*; D000293:Adolescent; D000328:Adult; D005260:Female; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D006801:Humans; D008297:Male; D055815:Young Adult