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

Abstract

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.

Keywords:

• transition
• Duchenne muscular dystrophy
• young disabled men
• life-course

Acknowledgments

The research was funded by the Department of Health in England as part of a Research Initiative on Long Term Neurological Conditions (Project 0530009). The views expressed here are those of the authors and not necessarily those of the funding body. The study was carried out in partnership with colleagues at the International Centre for Life (University of Newcastle) and two voluntary-sector organisations, the Muscular Dystrophy Campaign and the Duchenne Family Support Group. The authors are grateful to the study participants who made this research possible.