Researchers at Boston Children’s Hospital/Brandeis University are seeking unaffected siblings of boys with Duchenne Muscular Dystrophy (DMD) to participate in a survey about their perspectives on disclosure and communication within the family. The information gained from this study will be used to guide parents on how to best communicate information about DMD to their family members. The endpoint goal is to use the data from this study to create an informational brochure to give to parents facing a new DMD diagnosis.
In this study, participants will be asked to complete a ~20-minute, anonymous online survey, hosted via Qualtrics. The survey consists of a mixture of multiple choice, Likert scale, ranking, demographic, and open-ended questions. Questions are designed to assess siblings’ perspectives on the following topics: knowledge of DMD, memory of the disclosure process (what they were told, by whom, when, and how often), reaction to the information, and retrospective recommendations.
To be eligible, individuals must meet the following criteria:
- An unaffected sibling of a boy diagnosed with DMD
- Currently between the ages of 15 and 25
- Living in the United States
- Only one unaffected sibling from each family is eligible to participate
Individuals may not be eligible to participate in the following cases:
- Personal diagnosis of DMD
- No access to the online survey via computer or smart phone
- Non-English speaking
- Only one unaffected sibling per family is eligible to participate