Psychosocial impact of familial adenomatous polyposis on young adults: A Qualitative Study

Shab Mireskandari, Jennifer Sangster, Bettina Meiser*, Belinda Thewes, Claire Groombridge, Allan D. Spigelman, Lesley Andrews

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

17 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)409-417
Number of pages9
JournalJournal of Genetic Counseling
Volume18
Issue number5
DOIs
Publication statusPublished - Oct 2009
Externally publishedYes

Keywords

  • Familial Adenomatous Polyposis (FAP)
  • Young adults
  • Psychosocial impact
  • Adjustment
  • Coping
  • HEREDITARY COLORECTAL-CANCER
  • ILEORECTAL ANASTOMOSIS
  • OLDER PATIENTS
  • ILEAL POUCH
  • OF-LIFE
  • CHILDREN
  • PROCTOCOLECTOMY
  • DIAGNOSIS
  • COLECTOMY

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