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

Sarah Skyrme
  • Child Care in Practice, March 2016, Taylor & Francis
  • DOI: 10.1080/13575279.2016.1158152

What is it about?

Semi-structured interviews were conducted with boys who have Duchenne muscular dystrophy, a muscle-wasting condition. The main focus of the interviews was to explore how the boys thought they might make a decision to take part in medical research; however, they also discussed experiences of declining mobility, discomfort, and disablist attitudes. Their contributions suggest that life with Duchenne encompasses social and physical challenges and that there are limited opportunities to discuss these issues. Therefore, the paper seeks to build on understandings of life with a severe, degenerative condition and the intersection of impairment and social issues in the participants' lives.

Why is it important?

Severely disabled children and young people have valid insights to make on life with a disability. Their contributions add to understandings of the intersection of social and physical challenges in their lived experience.


Dr Sarah Louise Skyrme
Newcastle University

I was struck by the children and young people's eloquence in describing the daily challenges they experience due to poor mobility and because of disablist attitudes, which they recognised as unjust and, at times, condescending.

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The following have contributed to this page: Dr Sarah Louise Skyrme