Participation Patterns of Youth With Duchenne-Becker Muscular Dystrophies Across Four Settings

BackgroundKnowledge on occupational participation of individuals with neuromuscular disorders is scarce, particularly during their transition to adulthood.PurposeThis study explores participation patterns and perceived environmental barriers and supports among youth and young adults with Duchenne and Becker muscular dystrophy (DBMD) across four settings: home, school, community, and the workplace.MethodA descriptive cross-sectional study was conducted. Individuals with DBMD (n = 29), aged 15-29 years (M = 21.5, SD = 3.9), completed the self-reported Youth, Young-adult Participation and Environment Measure to assess participation (frequency, involvement, desire for change) across settings.FindingsRelatively, youth participated most often at home (M = 5.2/7.0), followed by school (M = 3.4), community (M = 2.5), and workplace (M = 1.9). Involvement levels remained relatively high (M = 4.4/5.0) across settings. Participants desired changes in nearly half of the community and workplace activities, with physical demands and inaccessibility identified as main barriers. Common supports included financial resources and available supplies.ConclusionsFindings underscore the need for targeted interventions addressing physical barriers and inaccessibility to enhance community and workplace participation. Occupational therapists are well-positioned to build supports and promote meaningful participation during the transition to adulthood.