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

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• 作者：Shab Mireskandari ; Jennifer Sangster ; Bettina Meiser ; Belinda Thewes ; Claire Groombridge ; Allan Spigelman and Lesley Andrews
• 关键词：Familial Adenomatous Polyposis (FAP) ; Young adults ; Psychosocial impact ; Adjustment ; Coping
• 刊名：Journal of Genetic Counseling
• 出版年：2009
• 出版时间：October, 2009
• 年：2009
• 卷：18
• 期：5
• 页码：409-417
• 全文大小：160.2 KB

文摘

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.