Abstract
Duchenne muscular dystrophy (DMD) is a progressive and life-limiting neuromuscular condition that impacts not only the affected individual, but the entire family unit. After receiving a DMD diagnosis in a child, parents are quickly tasked with disclosing information about the condition to other family members, especially unaffected siblings. Parents have reported that healthcare providers are unhelpful at providing specific advice on how to best navigate these difficult conversations, probably due to lack of research on this topic within academic literature. This study aimed to explore the optimal methods to communicate information about DMD with unaffected siblings in the family. Through an anonymous online survey, adolescents and young adults who have a brother with DMD were asked how they first learned about their brother’s diagnosis and whether they wished anything had been communicated with them differently. Analysis of survey data revealed that the majority of participants were satisfied with how information was communicated in their family. However, most siblings wished they learned more information about certain topics like treatment options or genetics during the initial disclosure, and stressed the importance of open and honest communication by parents. It may be beneficial for certain children to speak with a healthcare provider either during or after the initial disclosure for additional information and support. This study provides valuable insight into how, when, and what siblings prefer to learn about DMD such that medical professionals, like genetic counselors, may best assist parents with navigating the disclosure process within their family.