While guidelines advise genetic health professionals to support and encourage family communication about genetic risk, there can be professional uncertainty when advising parents about communication with children. We sought to explore genetic health professionals' views and experiences of facilitating parent/child communication in clinical practice, particularly in relation to adult-onset inherited conditions. Twenty-three in-depth interviews were conducted with United Kingdom genetic health professionals. Thematic analysis identified four main themes: offer professional involvement, encourage early disclosure, take a limited role, and challenges. Overall, our findings demonstrate a wide variation in genetic health professionals approaches to the provision of disclosure advice to parents, ranging from professionals who offered their communication skills and expertise, to those who took a limited role and reflected they were struggling, or even felt stuck. Giving tailored advice to parents about the timing of disclosure i.e. when to tell children, was a particular challenge because of the variability in children's maturity and coping styles. Nevertheless, we identified a range of strategies which were drawn upon by participants to facilitate parent/child communication in the genetic clinic. In conclusion, study results indicate that this remains a challenging and sensitive area, in which genetics professionals express a need for more resources and the clinical time to undertake this work. Further research is needed to develop and evaluate interventions which assist parent/child communication about serious inherited conditions and to help develop professionals' confidence and skills in this area.

中文翻译：

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遗传学专业人士通过遗传诊所促进父母/子女沟通的经验。

虽然准则建议遗传健康专业人员支持和鼓励家庭就遗传风​​险进行沟通，但在向父母提供有关与儿童沟通方面的建议时可能存在专业上的不确定性。我们试图探索遗传健康专业人士在临床实践中促进父母/孩子交流的观点和经验，特别是在成人成年遗传疾病方面。与英国基因健康专业人士进行了23次深度访谈。主题分析确定了四个主要主题：提供专业的参与，鼓励及早披露，发挥有限的作用和挑战。总体而言，我们的发现表明，遗传健康专业人士向父母提供披露建议的方法千差万别，从提供交流技巧和专业知识的专业人员到角色有限并反映出自己挣扎甚至陷入困境的人。由于孩子的成熟度和应对方式的差异，就披露的时间（即何时告诉孩子）向父母提供量身定制的建议是一个特殊的挑战。然而，我们确定了参与者所采用的一系列策略，以促进基因诊所中的父母/孩子交流。总之，研究结果表明，这仍然是一个充满挑战和敏感的领域，遗传学专业人员表示需要更多的资源和临床时间来开展这项工作。