‘More than a just a physical condition’ – recognising the educational and emotional needs of children and young adults with duchenne muscular dystrophy

Abstract

ABSTRACT Advances in medical care have seen children and young people with rare and life shortening conditions, living longer. This is the case for those living with Duchenne Muscular Dystrophy, whose life expectancy has doubled over the last few decades from around 20 to 40 years. Improving care has tended to focus on the physical aspects of the condition, rather than on wider psycho-social needs, such as social, cultural, psychological, educational, and emotional needs. Individuals with DMD are likely to have higher rates of neurodivergence and mental health diagnoses, and this, coupled with increased life expectancy, requires an urgent focus on how schools and colleges support the non-physical needs of pupils with DMD. We discuss existing research on DMD and education, before reporting findings from a small-scale mixed-methods study that explored parents views of their children’s experiences in education and that of two adults living with DMD. The findings revealed three main themes: lack of understanding of non-physical needs; lack of support and under-resourced systems; and strategies that work – a hopeful approach. We conclude that established educational and emotional aspects of DMD are often unacknowledged in schools and that ableism and societal assumptions about lifespan can affect education provision.