Received: 10 April 2018 Revised: 23 May 2018 Accepted: 10 June 2018 DOI: 10.1002/pbc.27350 Pediatric Blood & Cancer The American Society of Pediatric Hematology/Oncology RESEARCH ARTICLE Parent–child communication surrounding genetic testing for Li–Fraumeni syndrome: Living under the cloud of cancer Jessica M. Valdez 1,2 Breya Walker 3 Susan Ogg 3 Jami Gattuso 3 Melissa A. Alderfer 4 Kristin Zelley 5 Carol A. Ford 6 Justin N. Baker 7 Belinda N. Mandrell 3 Kim E. Nichols 1,2 1 Division of Cancer Predisposition, St. Jude Chil- dren's Research Hospital, Memphis, Tennessee 2 Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee 3 Division of Nursing Research, St. Jude Chil- dren's Research Hospital, Memphis, Tennessee 4 Center for Healthcare Delivery Sci- ence, Nemours Children's Health System, Wilmington, Delaware 5 Division of Oncology, The Children's Hospital of Philadelphia, Philadelphia, Philadelphia 6 Division of Adolescent Medicine, The Chil- dren's Hospital of Philadelphia, Philadelphia, Philadelphia 7 Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, Tennessee Correspondence Kim E. Nichols, Division of Cancer Predisposition, St. Jude Children's Research Hospital, Chili's Care Center I3311, MS1170, 262 Danny Thomas Place, Memphis, TN 38105. Email: Kim.Nichols@stjude.org Abstract Background: Advances in the application of genetic technologies reveal a growing number of her- itable 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 par- ents communicate with their children about test results and to elucidate the factors that influence the content and outcomes of these conversations. Methods: Semistructured interviews were conducted with 14 parents whose children tested pos- itive 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. 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. Conclusion: Parents of children with LFS desire open conversations about genetic testing and cancer risk. These conversations are challenging yet essential to enable child understanding of genetic risk status and enhance compliance with health-promoting and cancer surveillance mea- sures. Development of age-appropriate educational materials and novel clinical models to facili- tate parent–child conversations about genetic test results and risk status for cancer are needed. KEYWORDS cancer predisposition, communication, genetic testing, Li–Fraumeni syndrome, pediatric oncology 1 INTRODUCTION “Knowing this ‘cloud of Li–Fraumeni’ is over us has made things different… We don't put things off… We don't take each other for granted, and we tell each other that we love each other every single day. It made us live as a family unit a bit better.”—Parent of child who tested positive for Li– Fraumeni syndrome. Abbreviations: CCM, constant comparative method; CHOP, Children's Hospital of Philadelphia; FAP, familial adenomatous polyposis; LFS, Li–Fraumeni syndrome The last three decades have witnessed the discovery of a grow- ing number of heritable disorders associated with an increased risk of developing cancer during childhood. 1 Often, the optimal management of affected children relies upon clinical genetic testing followed by tar- geted surveillance for the early detection and treatment of tumors. However, for many conditions, uncertainty remains regarding if, when, and what type of cancer will occur as the result of the heritable pre- disposition. This uncertainty often leaves parents with the difficult decision of whether to have their children tested, and when to share genetic risk information with them. 2 This uncertainty is well exemplified for families with Li–Fraumeni syndrome (LFS), a cancer-predisposing condition caused by germline Pediatr Blood Cancer. 2018;e27350. c  2018 Wiley Periodicals, Inc. 1 of 8 wileyonlinelibrary.com/journal/pbc https://doi.org/10.1002/pbc.27350