Understanding of epilepsy by children and young people with epilepsy

Abstract

There is a striking dearth of studies focusing sensitively and in depth on the mainstream educational experiences of children with epilepsy, as viewed by those children themselves. The one-year project (2006–7) reported here addresses that gap. Children’s perceptions about mainstream teachers’ understanding of epilepsy and school based needs are particularly interesting and this work breaks new ground in that connection. The authors report findings from two complementary qualitative methods of data collection: (1) an e-survey of 44 self-selected children and young people with epilepsy, and (2) interviews (mainly individual) in mainstream schools with 22 children/young people with epilepsy. Overall, the children and young people (aged 7–18) were clear about the nature of their condition, including seizures. For many, there was an implicit reluctance in accepting epilepsy as a “part of them”; self-reported feelings of secrecy, stigma and shame abounded. This had repercussions for how schools were seen to need to respond with sensitivity and knowledge-based understanding. Taking a qualitative methodological approach revealed important insights into complex concepts like stigma in the school context. This was illustrated in children and young people’s readiness to
talk about their feelings of “difference” in relation to others when given the opportunity to do so sensitively. The findings have important implications for how schools and services work in a genuinely fully inclusive way with children and young people who have epilepsy.

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ORCID for Sarah Parsons: orcid.org/0000-0002-2542-4745

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