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

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. 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. 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. 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. Clinicians should incorporate youths’ and parents’ perspectives on participation when designing and implementing interventions for individuals with Duchenne or Becker muscular dystrophies.A realistic and pragmatic approach to youth participation should consider functional limitations and future opportunities for meaningful engagement.When seeking to increase the participation of youth with Duchenne or Becker muscular dystrophies clinicians should account for the youths’ ambivalence and uncertainty in self-identity development. Clinicians should incorporate youths’ and parents’ perspectives on participation when designing and implementing interventions for individuals with Duchenne or Becker muscular dystrophies. A realistic and pragmatic approach to youth participation should consider functional limitations and future opportunities for meaningful engagement. When seeking to increase the participation of youth with Duchenne or Becker muscular dystrophies clinicians should account for the youths’ ambivalence and uncertainty in self-identity development.