welcome to oneFAPvoice
- a positively charged Familial Adenomatous Polyposis community.- join today!
- login
Psychosocial Impact of Familial Adenomatous Polyposis on Young Adults: A Qualitative Study
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.
organization: Prince of Wales HospitalDOI: 10.1007/s10897-009-9231-2
read more full text source
expertly curated content related to this topic
-
Bon Voyage: Traveling with a J-Pouch Part 1https://www.youtube.com/watch?v=NlhsEEuo...
-
Jon Olis’s StoryAfter being misdiagnosed with hemorrhoid...
-
@Joann_458I have familial adenomatous polyposis, s...
-
Looking FAPulous Thanks to the Kindness of Others!https://www.youtube.com/watch?v=tSa320Ul...
-
Prevalence and Outcome of Anemia After Restorative Proctocolectomy: A Clinical Literature ReviewPURPOSE : Iron and/or vitamin B12 defici...
-
Bonnies Diaryhttps://jtvcancersupport.com/embed/26553...
-
Rectal and Pouch Recurrences After Surgical Treatment for Familial Adenomatous PolyposisBACKGROUND : Familial adenomatous polypo...