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Living with Duchenne Muscular Dystrophy: Relational Autonomy and Decision‐Making
Author(s) -
Skyrme Sarah
Publication year - 2016
Publication title -
children and society
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.538
H-Index - 58
eISSN - 1099-0860
pISSN - 0951-0605
DOI - 10.1111/chso.12134
Subject(s) - duchenne muscular dystrophy , autonomy , independence (probability theory) , agency (philosophy) , psychology , personal autonomy , muscular dystrophy , developmental psychology , medicine , sociology , political science , social science , statistics , mathematics , law
Interviews were conducted with boys and young men who have Duchenne muscular dystrophy, exploring their thoughts on making a decision to participate in medical research. This article focuses on one of the key findings, discussing how the participants identified their parents as carers, spokespersons and advisors. The term ‘relational autonomy’ encapsulates these co‐operative relationships, illustrating how they can help young people living with a degenerative disability to exercise some agency and autonomy. The boys and their families have demonstrated how disabled children who are physically dependent can be supported by their parents, without compromising independence.