The Influence of Adolescence on Parents' Perspectives of Testing and Discussing Inherited Cancer Predisposition.

摘要: Li-Fraumeni syndrome (LFS) is a highly penetrant cancer predisposition that may present with first before or during adolescence/young adulthood. Families offered LFS genetic testing for their children can inform our understanding of how the unique developmental context adolescence influences parental perspectives about and discussions risk. In this study, semi-structured interviews were conducted 46 parents at risk to capture those perspectives. Analysis utilized summary descriptive statistics inductive qualitative content coding. Most (33/46; 72%) expressed beliefs importance and/or Twenty-six related influence cognitive, physical, social changes occurring adolescence. Aspects perceived as promoting testing/discussion included appropriateness, risks in adolescence, need medical screening decisions, on behaviors, transition adult health care, reproductive risks. complicating testing/discussions potential negative emotional impact, misunderstanding, added burden, impact self-image future planning. Parents recognize complex has conversations surrounding results. Further research needed understand actual young people, best support adolescents within broader heritable diseases.