Participation experiences of young people with neuromuscular dystrophies and their parents: a qualitative dyadic analysis

Purpose: To explore the participation experiences of adolescents and young adults with Duchenne or Becker muscular dystrophies (DMD/BMD) and their parents across home, education, community, and work settings. Materials and methods: A phenomenological approach was applied. Participants were eight dyads (n = 16) of youth with DMD/BMD, aged 15 to 26 (M = 19.9 years, SD = 4.3), and their parents. Dyads participated in individual semi-structured stimulated recall Interviews (SRI), reflecting on the results of the Youth, Young-adult Participation and Environment Measure completed by the youth. A dyadic analysis followed thematic analysis. Results: We identified three central themes. A dyadic analysis of these themes yielded six subthemes: (1) Negotiating the Boundaries of Disability and Self- functional limitations and their consequences for participation; disclosing versus concealing the condition; (2) Between Purpose and Enjoyment: Everyday Meanings of Participation- exploring activities and contexts; motivations for engagement; (3) Participation as a Pathway to Adulthood- future opportunities for meaningful participation; social contexts for personal development. Conclusions: Findings highlight two interrelated conceptual dimensions: (a) a realistic-pragmatic view of function and participation; (b) participation and self-identity building. Understanding these dimensions may inform participation-focused interventions that support young individuals with DMD/BMD as they navigate the transition to adulthood.