Parent-Child Communication and Reproductive Considerations in Families with Genetic Cancer Predisposition Syndromes: A Systematic Review
| Autor: | Olivia E. Clark, Meghan Bowman-Curci, Alison Gehred, Gwendolyn P. Quinn, Molly Gardner, Taylor M Dattilo, Kristin Zajo, Megan E. Sutter, Keagan G. Lipak, Amani Sampson, Cynthia A. Gerhardt, Leena Nahata |
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| Rok vydání: | 2021 |
| Předmět: |
Parents
Adolescent Reviews Young Adult 03 medical and health sciences 0302 clinical medicine Genetic cancer Neoplasms medicine Humans Genetic Predisposition to Disease 030212 general & internal medicine Parent-Child Relations Young adult Child Parent-child communication Genetic testing Genetics medicine.diagnostic_test business.industry Communication Syndrome Oncology 030220 oncology & carcinogenesis Pediatrics Perinatology and Child Health business |
| Zdroj: | J Adolesc Young Adult Oncol |
| ISSN: | 2156-535X 2156-5333 |
| Popis: | Background: Uptake of genetic testing for heritable conditions is increasingly common. In families with known autosomal dominant genetic cancer predisposition syndromes (CPS), testing youth may reduce uncertainty and provide guidance for future lifestyle, medical, and family building considerations. The goals of this systematic review were to examine: (1) how parents and their children, adolescents, and young adults (CAYAs) communicate and make decisions regarding testing for CPS and (2) how they communicate and make decisions about reproductive health/family building in the context of risk for CPS. Methods: Searches of MEDLINE/Pubmed, CINAHL, Web of Science, and PsycINFO yielded 4161 articles since January 1, 2000, which contained terms related to youth, pediatrics, decision-making, genetic cancer predispositions, communication, and family building. Results: Articles retained (N = 15) included five qualitative, six quantitative, and four mixed-method designs. Parents generally agreed testing results should be disclosed to CAYAs at risk or affected by genetic conditions in a developmentally appropriate manner. Older child age and child desire for information were associated with disclosure. Greater knowledge about risk prompted adolescents and young adults to consider the potential impact on future relationships and family building. Conclusions: Most parents believed it was their responsibility to inform their CAYAs about genetic testing results, particularly to optimize engagement in recommended preventative screening/lifestyle behaviors. Disclosing test results may be challenging due to concerns such as young age, developmental appropriateness, and emotional burden. Additional research is needed on how CPS risk affects CAYAs' decisions about reproductive health and family building over time. |
| Databáze: | OpenAIRE |
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