Factors affecting desired participation in transition to an adult life with Duchenne muscular dystrophy (DMD).

BackgroundFor people with Duchenne muscular dystrophy (DMD), the transition into their desired adulthood can be challenging.ObjectivesThis study aims to; (1) exploring the desired participation for (young) adults with Duchenne muscular dystrophy (DMD); (2) exploration of the view and role of parents in this process; and (3) capturing the gap and the influencing factors between the current and desired situation.MethodsA cross-sectional digital survey was conducted, based on literature, expert opinion, and interviews with young adults with DMD and their parents. Descriptive and non-parametric statistics were used.Results43 adults* with DMD an 30 parents completed the survey. All adults with DMD wanted to have an independent life. They were satisfied with their leisure activities. Gaps between the desired and current situation were identified concerning facilities and aids, social activities, and employment. Important factors of influence on these topics were accessibility, outdoor mobility, adequate care facilities, self-confidence, adequate knowledge of professionals and caregivers, and support of parents. The 30 participating parents saw limited opportunities in accessing facilities and aids, job opportunities, and their son having an intimate relationship.ConclusionsAdults with DMD desire a meaningful and independent life. The challenges they, and their parents face are mainly on social participation. More focus and collaboration is needed between health care services, social services and occupation environments to empower people with DMD living their desired adult life.*Adults; In this article, we use the term adults. By this we include boys aged 16 and 17.