The Transition to Adulthood for Young Men with Duchenne Muscular Dystrophy: Experiences of Young Adults, Parents, and Service Providers

Abstract

Background: While medical advancements have extended the lives of young men with Duchenne Muscular Dystrophy (DMD), research on their lived experiences during the transition to adulthood remains limited. There is a paucity of international research to date which has explored how young men with DMD experience this transition or how services support their evolving needs, and none from the Irish context. This study aims to address these critical gaps by providing context-specific, lived-experience insights. Objectives: The research objectives were to explore: 1) how transition to adulthood is experienced by young adults with DMD; 2) parents' experiences of their sons' transition to adulthood; 3) service providers' perspectives on current service provision; and 4) existing supports and what might assist young people in preparing for, and during, transition to adulthood. Methodology: A qualitative descriptive methodology was employed. Semi-structured interviews were conducted with 8 young men aged 18 and older, 7 parents, and 9 service providers. Tailored interview guides were developed, piloted, and refined for each group. Reflexive thematic analysis was used to analyse data from each group before integrating findings. Results: Advances in medical care have extended the life expectancy of young men with DMD, reshaping it from a childhood condition to one where individuals are now living longer into adulthood. However, this has not been met with adequate transition planning or support services, leaving many unprepared for adult life. The young men described increasing dependency and limited access to supports such as personal assistance (PA), accessible transportation, and tailored transition planning. Many felt left behind as peers progressed into education, employment, and independent living, while their own opportunities were constrained by physical limitations and lack of targeted support. Accessibility barriers, across education, transport, housing, and social spaces, further restricted participation and reinforced dependence on family. Employment was viewed as desirable but largely unattainable due to inaccessible workplaces, limited transportation, and inadequate vocational support. Both young men and their parents reported navigating education and career paths alone, without structured guidance. Social participation declined after school, with few inclusive opportunities and environments. Support and services were described as fragmented, inconsistent, and reactive. Service providers acknowledged service fragmentation and a continued focus on physical health over broader psychosocial and transition planning. All participants described the contrast between structured, multidisciplinary care provided in children's services and the disjointed nature of adult service provision. Limited access to mental health supports and a lack of structured transition services were described. PA provision, while essential for independence, was under-resourced and difficult to access, with many families reporting challenges in securing reliable, trained support. Overall, the findings identify the need for more holistic, coordinated, and person-centred services that reflect the lived realities of young men with DMD as they navigate adulthood. Conclusion: This research highlights the challenges in supporting autonomy and participation as individuals with DMD live longer into adulthood. The study offers valuable insights into how current services respond to their needs and identifies key gaps in support. It calls for DMD-specific, person centred planning and improved collaboration between supporting services. These findings provide a foundation for the development of more responsive transition supports. Further research is needed to inform the creation of an evidence-informed, co-created transition programme tailored to the needs of young men with DMD.