Psychosocial Impact of Familial Adenomatous Polyposis on Young Adults: A Qualitative Study |
| |
Authors: | Shab Mireskandari Jennifer Sangster Bettina Meiser Belinda Thewes Claire Groombridge Allan Spigelman Lesley Andrews |
| |
Affiliation: | (1) Department of Medical Oncology, Prince of Wales Hospital, Randwick, NSW, 2031 Sydney, Australia;(2) Prince of Wales Clinical School, The University of New South Wales, Kensington, NSW, 2052, Australia;(3) Hunter New England Family Cancer Service, Newcastle, NSW, Australia;(4) University of New South Wales St Vincent’s Hospital Clinical School, Sydney, NSW, 2010, Australia;(5) Psychosocial Research Group, Prince of Wales Hospital, Randwick, NSW, 2031, Australia; |
| |
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. |
| |
Keywords: | |
本文献已被 SpringerLink 等数据库收录! |
|