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.
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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.
Perspectives
This article contends that being young and living with a severe condition does not negate agency, those interviewed had a strong sense of self hood and recognised their right to be listened to and treated as engaged members of society. Their lives are rooted in sociocultural contexts and it is out of these contexts that they made mature observations both about injustice and/or patronising attitudes toward them, and, how they develop independence despite their disability. The participants live in relational contexts that influence and support them as they approach making decisions, and it was apparent that this supported negotiation with their parents had been developed as they matured and as they became less mobile.
Dr Sarah Louise Skyrme
Newcastle University
Read the Original
This page is a summary of: Living with Duchenne Muscular Dystrophy: Relational Autonomy and Decision-Making, Children & Society, July 2015, Wiley,
DOI: 10.1111/chso.12134.
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