Parent-child communication surrounding genetic testing for Li-Fraumeni syndrome: Living under the cloud of cancer

Pediatric Blood & Cancer
Jessica ValdezKim E Nichols

Abstract

Advances in the application of genetic technologies reveal a growing number of heritable disorders associated with an increased risk to develop cancer during childhood. As genetic testing is increasingly employed in the clinical setting, it is essential to understand whether parents communicate with their children about test results and to elucidate the factors that influence the content and outcomes of these conversations. Semistructured interviews were conducted with 14 parents whose children tested positive for Li-Fraumeni syndrome (LFS). Semantic content analysis was performed on transcribed interviews, focusing on questions related to parent-child conversations about the genetic testing process and disclosure of positive test results. All parents emphasized the importance of involving children in conversations about LFS. The majority (93%) identified as being part of "cancer families" in which prior experiences with cancer created opportunities for communication. While all had spoken with their children about cancer, only seven (50%) specifically disclosed to their children that they had tested positive for LFS. The most common reason cited for nondisclosure at the time of this study was the young age of the children. Pare...Continue Reading

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Citations

Sep 25, 2019·Cold Spring Harbor Perspectives in Medicine·Jaclyn Schienda, Jill Stopfer
Jul 14, 2021·Circulation. Genomic and Precision Medicine·Priyanka AhimazWendy K Chung

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