Abstract
Duchenne Muscular Dystrophy (DMD) is a progressive neuromuscular condition that primarily affects males. A diagnosis of DMD affects not only the diagnosed boy, but also the entire family. Due to the progressive nature of the condition and dire prognosis for the affected child, parents often shy away from this difficult conversation with their unaffected children and reported they are not given any tools to aid them through these conversations. Using semi structured interviews, this study asked adolescents and young adults who have a brother affected by DMD questions about their first conversation regarding their brother’s diagnosis and what information they wished they had been given. Five main themes were identified throughout all interviews: (1) Growing up with DMD, (2) A Desire to Know “Everything,” (3) Preference for a Medical Professional to Help Explain DMD, (4) Unchanging Feelings Toward Parents or Brother, (5) Coping Mechanisms. All participants reported that a parent was the first person to discuss the DMD diagnosis and felt as though knowing more information was best. Participants also claimed to have many of the same thoughts as parents and desired the ability to discuss their brother’s disorder with a medical professional. This study gives insight into how siblings prefer to learn about the DMD diagnosis, as well as how much information is adequate to disclose. It also demonstrates a need for medical professionals, like genetic counselors, to be involved and provides valuable insight to help parents facilitate these conversations with their unaffected children.