‘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.