Pediatric brain tumor survivorship populations have not been typically offered genetic services as part of routine care. Genetic services can be defined as family history collection, genetic risk assessment for a patient and family members, and coordination of genetic testing. Prior research has focused on the integration of genetic services in the general pediatric oncology survivorship population and found a need for these services to be implemented. Gathering a family history and providing a genetic risk assessment have previously been determined to be an integral step in determining if an individual's cancer was due to a hereditary predisposition. The purpose of this study was to examine parental attitudes regarding the need for genetic services in their child's pediatric brain tumor survivorship clinic. Twelve semi‐structured interviews were conducted with parents participating in the Brain STAR (Survivors Taking Action and Responsibility) program at Ann and Robert H. Lurie Children's Hospital of Chicago. A grounded theory approach was used to code and analyze the results thematically. Five key themes were identified: participants’ perceived benefits and barriers regarding receiving genetic services, desirable time for implementation of these services, relevance of family history, and their thoughts regarding reproductive risk. These results provide insight for genetics professionals regarding the need for genetic services in this population, and how to best implement them.

中文翻译：

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父母对儿科脑肿瘤生存计划中遗传服务需求的态度

小儿脑肿瘤存活人群通常没有作为常规护理的一部分提供遗传服务。遗传服务可以定义为家族史收集、患者和家庭成员的遗传风险评估以及基因检测的协调。先前的研究侧重于将遗传服务整合到一般儿科肿瘤存活人群中，并发现需要实施这些服务。收集家族史和提供遗传风险评估以前已被确定为确定个人癌症是否由遗传易感性引起的不可或缺的步骤。本研究的目的是检查父母对他们孩子的儿科脑肿瘤存活诊所需要遗传服务的态度。在芝加哥安和罗伯特 H. Lurie 儿童医院，对参加 Brain STAR（幸存者采取行动和责任）计划的父母进行了 12 次半结构化访谈。使用扎根理论方法对结果进行主题编码和分析。确定了五个关键主题：参与者对接受遗传服务的感知益处和障碍、实施这些服务的理想时间、家族史的相关性以及他们对生殖风险的看法。这些结果为遗传学专业人士提供了有关该人群遗传服务需求以及如何最好地实施这些服务的见解。s 芝加哥医院。使用扎根理论方法对结果进行主题编码和分析。确定了五个关键主题：参与者对接受遗传服务的感知益处和障碍、实施这些服务的理想时间、家族史的相关性以及他们对生殖风险的看法。这些结果为遗传学专业人士提供了有关该人群遗传服务需求以及如何最好地实施这些服务的见解。s 芝加哥医院。使用扎根理论方法对结果进行主题编码和分析。确定了五个关键主题：参与者对接受遗传服务的感知益处和障碍、实施这些服务的理想时间、家族史的相关性以及他们对生殖风险的看法。这些结果为遗传学专业人士提供了有关该人群遗传服务需求以及如何最好地实施这些服务的见解。