Faculty of Health and Medicine, Northern Clinical School, University of Sydney, Camperdown, NSW, Australia.
NSLHD Familial Cancer Service, Department of Cancer Services, Royal North Shore Hospital, St Leonards, NSW, Australia.
J Genet Couns. 2021 Aug;30(4):1119-1132. doi: 10.1002/jgc4.1396. Epub 2021 Mar 31.
Communication with children about hereditary conditions in the family can be difficult for parents. Yet, good communication strategies are leading determinants of adaptation and resilience. With inherited cancer predisposition syndromes that can affect young children such as Li-Fraumeni syndrome (LFS) and hereditary pheochromocytoma and paraganglioma syndrome (HPPS), genetic testing and subsequent surveillance in at-risk children is the optimal intervention. Given testing often commences early, providing children and their parents with appropriate genetic counseling and communication strategies is important for informed decision making. To inform such communication strategies, we used a bibliotherapeutic framework, where stories are delivered prescriptively (i.e., 'bibliotherapy'), to develop a psycho-educational resource for children aged 5-10 years old at risk of either LFS or HPPS. Illustrated storybooks for children were created based on models of developmental comprehension. To ascertain their experience, parents were invited to read a storybook to their child/ren and participate in semi-structured qualitative interviews. Transcripts were analyzed thematically using a general inductive approach. The bibliotherapeutic resource reportedly supported parents with communication about these issues without raising emotional distress in either themselves or their children. The key stages of a bibliotherapeutic interaction were facilitated by the use of this resource, and all parents reported that it would have been useful when their children were first tested and/or diagnosed. This study lays the foundation for the application of bibliotherapy as a psycho-educational intervention in genetic counseling and demonstrates that bibliotherapy may improve the process of communication between parents and children regarding pediatric-inherited cancer syndromes.
与儿童沟通家族遗传性疾病对父母来说可能很困难。然而，良好的沟通策略是适应和恢复的主要决定因素。对于可能影响幼儿的遗传性癌症易感性综合征，如李-佛美尼综合征（LFS）和遗传性嗜铬细胞瘤和副神经节瘤综合征（HPPS），对高危儿童进行遗传检测和随后的监测是最佳干预措施。鉴于检测通常很早就开始进行，为儿童及其父母提供适当的遗传咨询和沟通策略对于做出明智的决策非常重要。为了制定这样的沟通策略，我们使用了一种图书治疗框架，根据该框架，故事是有针对性地提供的（即“图书治疗”），为有患 LFS 或 HPPS 风险的 5-10 岁儿童开发了一种心理教育资源。根据发展理解模型为儿童创作了插画故事书。为了确定他们的体验，邀请父母为孩子阅读故事书并参与半结构化的定性访谈。使用一般归纳方法对转录本进行主题分析。据报道，这种图书治疗资源有助于父母就这些问题进行沟通，而不会给他们自己或孩子带来情绪困扰。这种资源促进了图书治疗互动的关键阶段，所有父母都报告说，当孩子第一次接受测试和/或诊断时，它将非常有用。这项研究为图书治疗作为遗传咨询中的心理教育干预措施的应用奠定了基础，并表明图书治疗可能会改善父母与儿童之间关于儿科遗传性癌症综合征的沟通过程。
