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首页> 外文期刊>Pediatric blood & cancer >Parent–child communication surrounding genetic testing for Li–Fraumeni syndrome: Living under the cloud of cancer
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Parent–child communication surrounding genetic testing for Li–Fraumeni syndrome: Living under the cloud of cancer

机译：Li-Fraumeni综合征的父母通信围绕遗传检测：生活在癌症云下

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Abstract Background 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. Methods 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. 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 measures. Development of age‐appropriate educational materials and novel clinical models to facilitate parent–child conversations about genetic test results and risk status for cancer are needed.
机译：摘要背景技术在遗传技术应用中的应用揭示了与在童年时期发展癌症的风险增加的繁殖障碍越来越多的遗传障碍。随着遗传检测越来越多地在临床环境中使用，必须了解父母是否与孩子沟通有关测试结果并阐明影响这些谈话内容和结果的因素。方法使用14项父母进行半系统访谈，其儿童对李弗劳明综合征（LFS）进行阳性。对转录访谈进行了语义内容分析，重点是与关于父母对话有关关于遗传测试过程的父子对话和披露阳性测试结果的问题。结果所有父母都强调了涉及儿童对谈话的重要性。大多数（93％）被确定为“癌症家庭”的一部分，其中癌症的经验为沟通创造了机会。虽然所有人都与孩子们谈过了癌症，但他们的孩子只有七（50％），他们对LFS测试了阳性。在这项研究时，对于非学龄儿时，对于孩子的年轻人来说，最常见的原因是孩子的年轻时代。结论LFS父母渴望开放关于遗传检测和癌症风险的对话。这些对话是挑战，对于能够使儿童了解遗传风险状况并加强遵守健康促进和癌症监测措施，这是一个挑战性。发展年龄适当的教育材料和新型临床模型，以促进父母对话的关于遗传测试结果和癌症风险状态。

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