Duchenne muscular dystrophy (DMD) is a progressive childhood onset neuromuscular disease with no known cure. There is extensive literature about the impact of a diagnosis on the psychosocial well‐being of unaffected siblings, with a need for additional research to provide information about optimal ways to disclose this information to unaffected children. We sought to explore the parental experiences of disclosing a sibling's diagnosis of DMD to unaffected children who were age 8–17 years old either at the time of their sibling's diagnosis or presently. Parents were recruited through Maryland Muscular Dystrophy Association, Parent Project Muscular Dystrophy, and Cincinnati Children's Hospital Medical Center Neuromuscular Center. An interview guide, rooted in family communication, was created to incorporate themes and topics found in literature specific to DMD and disclosure to unaffected siblings. We qualitatively explored these experiences through semi‐structured interviews and performed thematic analysis using a coding system to identify overarching themes and subthemes. Several main themes regarding challenges to the disclosure process emerged. We identified the following themes in procedural aspects of disclosure: lack of provider support, importance of the DMD community, and open and gradual timeline of disclosure. Under emotional experiences, we identified these themes: overwhelming nature, elements of surprise disclosure, and balancing parental and sibling needs. Most questions from unaffected siblings related to procedural elements of care such as treatments and equipment. Additional unanticipated themes emerged that may contribute to the knowledge of family culture surrounding DMD: the complex role of Facebook as a family resource, deferring carrier testing for siblings, and inclusion of DMD in school projects. While the process of disclosure is complicated by a variety of factors such as lack of provider support and overwhelming emotional burden, families highlight the importance of open communication in discussion with unaffected children.

中文翻译：

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Duchenne 肌营养不良症的公开交流促进了父母向未受影响的兄弟姐妹的披露过程

杜氏肌营养不良症 (DMD) 是一种进行性儿童神经肌肉疾病，尚无治愈方法。有大量关于诊断对未受影响的兄弟姐妹的社会心理健康影响的文献，需要更多的研究来提供有关向未受影响的儿童披露这些信息的最佳方式的信息。我们试图探索向 8-17 岁未受影响儿童披露其兄弟姐妹诊断为 DMD 的父母经历，这些儿童在兄弟姐妹确诊时或现在。家长是通过马里兰州肌肉萎缩症协会、家长项目肌肉萎缩症和辛辛那提儿童医院医学中心神经肌肉中心招募的。一份面试指南，植根于家庭沟通，创建的目的是将特定于 DMD 的文献中的主题和主题结合起来，并向未受影响的兄弟姐妹披露。我们通过半结构化访谈定性地探索了这些经验，并使用编码系统进行了主题分析，以确定总体主题和子主题。出现了关于公开过程挑战的几个主要主题。我们在披露的程序方面确定了以下主题：缺乏提供者支持、DMD 社区的重要性以及公开和渐进的披露时间表。在情感体验下，我们确定了这些主题：压倒性的自然、意外披露的元素以及平衡父母和兄弟姐妹的需求。未受影响的兄弟姐妹提出的大多数问题都与治疗和设备等护理程序要素有关。出现了其他意想不到的主题，可能有助于了解围绕 DMD 的家庭文化：Facebook 作为家庭资源的复杂作用、推迟对兄弟姐妹的携带者测试以及将 DMD 纳入学校项目。虽然披露过程因各种因素而变得复杂，例如缺乏提供者的支持和沉重的情绪负担，但家庭强调在与未受影响的儿童讨论时公开沟通的重要性。