Meaningful occupations of young adults with muscular dystrophy and other neuromuscular disorders

Youth with Duchenne muscular dystrophy (DMD) and other neuromuscular disorders are living well into adulthood and often need help engaging in meaningful occupations.

Our purpose was to explore enablers and barriers to engaging in meaningful occupations, from the perspectives of youth, parents, and practitioners.

This qualitative study involved 26 participants (11 parents, eight youth ages 19 to 28 [mean = 22.3 years], seven practitioners). Data were obtained from semistructured interviews and analyzed using an interpretive descriptive approach.

Youth with DMD and neuromuscular disorders engage in meaningful occupations in a variety of ways. Occupational enablers were supports and accommodations and self-care skills and coping strategies, while occupational barriers involved societal expectations of a normative adulthood, discrimination and inaccessible environments, lack of supports and resources, medical challenges, fatigue, lack of motivation, and social isolation and depression.

Practitioners should work to uncover what youth consider important and connect them to appropriate resources so they can engage in meaningful occupations.