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Understanding of epilepsy by children and young people with epilepsy

Understanding of epilepsy by children and young people with epilepsy
Understanding of epilepsy by children and young people with epilepsy
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.
epilepsy, pupils, schools, inclusion, qualitative research, support
0885-6257
321-335
Lewis, Ann
50911ac4-d480-4488-b745-1c405180d3bb
Parsons, Sarah
5af3382f-cda3-489c-a336-9604f3c04d7d
Lewis, Ann
50911ac4-d480-4488-b745-1c405180d3bb
Parsons, Sarah
5af3382f-cda3-489c-a336-9604f3c04d7d

Lewis, Ann and Parsons, Sarah (2008) Understanding of epilepsy by children and young people with epilepsy. European Journal of Special Needs Education, 23 (4), 321-335. (doi:10.1080/08856250802387273).

Record type: Article

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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Published date: November 2008
Keywords: epilepsy, pupils, schools, inclusion, qualitative research, support

Identifiers

Local EPrints ID: 170383
URI: https://eprints.soton.ac.uk/id/eprint/170383
ISSN: 0885-6257
PURE UUID: 1fdfedb2-a3ff-4cde-94bd-ecf18c2503a1
ORCID for Sarah Parsons: ORCID iD orcid.org/0000-0002-2542-4745

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Date deposited: 06 Jan 2011 10:31
Last modified: 06 Jun 2018 12:32

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Contributors

Author: Ann Lewis
Author: Sarah Parsons ORCID iD

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