‘Wasting precious time’: young men with Duchenne muscular dystrophy negotiate the transition to adulthood

Supporting young disabled people at the transition to adulthood has long proved to be a challenging task. Young men with Duchenne muscular dystrophy (DMD) have until recently died before they reached adulthood. Now they are living longer but with a corresponding lack of forethought about how they should be supported in adulthood. This study investigated in three regions of England what was happening for young men with DMD and how they were being supported. Semi-structured interviews were conducted with 37 young men (aged 15+) with DMD and 58 other family members. The findings suggested that too many young men had finished education and training and were at home during the day without meaningful activity. In part, the complicated nature of shifting expectations across the life-course had made planning for an adult life with DMD very challenging. This could be exacerbated by problematic assumptions and stubborn barriers.