In and On their Own Terms: Children and Young People's Accounts of Life with Duchenne Muscular Dystrophy

Abstract

ABSTRACTSemi-structured interviews were conducted with boys and young men who have Duchenne muscular dystrophy (DMD), a severe, degenerative condition that only affects boys. The main focus of the interviews was to explore how the participants thought they might make a decision to take part in medical research. To better understand this, aspects of the participants’ lives were discussed; they talked about the impact of discomfort and declining mobility, and the social issues they experienced, such as discrimination and a sense of difference. Their observations indicate that living with a degenerative condition has physical and social impacts, and that there are limited opportunities for them to talk about these issues. It was also apparent that parents are key figures who provide care for their child, often in the absence of comprehensive support services. Raising these matters privileges the experiences of severely disabled children and young people, who live with increasing muscle weakness, disablist attitudes and intensifying support needs. Their contributions build on understandings of life with a degenerative condition, highlighting the intersection of impairment and social issues in their lived experience.