Living with Duchenne Muscular Dystrophy
What is it about?
Boys and young men with Duchenne muscular dystrophy were interviewed to explore how they thought they might make a decision to take part in medical research. The boys described how they live in supportive relationships with their parents; these relationships are likely to influence how decisions are reached with parental input, whilst also recognising the participants' own preferences and self hood.
Why is it important?
Boys and young men with Duchenne have been under-researched and this study draws on the participants' accounts of how they live and cope with a severe, degenerative condition and how think they would make a decision to take part in medical research. Their views help us understand how decision-making emerges from relational contexts and also portrays how those living with a severe condition can experience agency and independence in their lives.
The following have contributed to this page: Dr Sarah Louise Skyrme
In partnership with: