"I have always lived with the disease in the family": Family adaptation to hereditary cancer-risk

Silva, Eliana; Gomes, Pedro T.; Matos, Paula Mena; Silva, Eunice R.; Silva, João; Brandão, Catarina; Castro, Fernando de; Neves, Maria Carolina; Sales, Célia

doi:10.5281/zenodo.5825636

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“…These vicarious intrafamily learning phenomena have been found in the adaptation process of mutation carriers, both in the adjustment phase to the genetic test result and in the long-term cancer risk management phase. 6,7 The present review adds to these findings by showing that these intra-familial modeling processes start early during adolescence, years before it is possible to undergo genetic testing (e.g., after 18 years old for late onset syndromes). Thus, the adaptation process of the mutation carrier parent can shape health-related behaviors of the future generation, and it is plausible that it influences offspring attitudes and adherence to genetic testing.…”

Section: Discussionmentioning

confidence: 75%

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Communication about hereditary cancer risk to offspring: A systematic review of children's perspective

et al. 2023

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Objective: The present review describes how children experience hereditary cancer risk communication within the family. Methods: Searches for studies between 1990 and 2020 on PubMed and EBSCO were undertaken, and 15 studies met the inclusion criteria, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The findings informed: (1) how, when and what is discussed about hereditary cancer risk in the family; (2) how does family communication about hereditary cancer risk impact children on psychosocial and behavioral outcomes; (3) what are the child's preferences regarding hereditary cancer risk communication within the family. Results: Disclosure is done mostly by both parents, or mothers only, which is in accordance with the children's preferences. Children value open communication about cancer risk with their parents, although they report experiences of fear, surprise, feeling unhappy, and concern about the increased risk of cancer.Regardless of the method of disclosure, children may be particularly sensitive to their parent's emotional state at the time of disclosure, and they learn from their parents' experiences the potential implications of cancer risk. Children also report that it would be helpful to learn more about genetic cancer syndromes via written materials, and/or meet a genetic counselor. Conclusions:Children rely on their parents as the primary models of the hereditary cancer experience. Therefore, parents play a central role in the psychological adjustment of children. Findings point to the relevance of family-centered care in hereditary cancer risk that targets not only the mutation carrier individually but also their children and partners.

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Section: Discussionmentioning

confidence: 75%

“…4 Once genetic risk information (GRI) is distributed among family networks, the moment of becoming aware of the increased susceptibility to cancer can be a disturbing event, both at personal and family levels. [5][6][7] Growing up in a family with known hereditary cancer risk may involve additional psychosocial burden and be challenging.…”

Section: Introductionmentioning

confidence: 99%