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首页> 外文期刊>European Journal of Special Needs Education >Understanding of epilepsy by children and young people with epilepsy
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Understanding of epilepsy by children and young people with epilepsy

机译：儿童和青少年癫痫的认识

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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.
机译：缺乏惊人的研究，敏感和深入地集中在癫痫儿童的主流教育经历上，这些儿童本身认为。此处报告的为期一年的项目（2006-7）解决了这一差距。儿童对主流教师对癫痫病和学校需求的理解的看法特别有趣，这项工作在这方面开辟了新局面。作者报告了两种互补的定性数据收集方法的发现：（1）对44名自我选择的患有癫痫病的儿童和年轻人进行电子调查，以及（2）在主流学校接受22名儿童/年轻人的访谈（主要是个人）。癫痫病。总体而言，儿童和年轻人（7-18岁）对他们的状况（包括癫痫发作）的性质很清楚。对于许多人来说，不愿将癫痫病作为“其中的一部分”。自我报告的秘密，污名和耻辱感比比皆是。这对如何看待学校需要以敏感性和基于知识的理解做出反应产生了影响。采用定性的方法论方法揭示了对复杂概念（例如在学校环境中的污名）的重要见解。当儿童和年轻人有机会敏感地谈论他们与他人的“差异”时，就可以说明这一点。这些发现对于学校和服务机构如何与患有癫痫病的儿童和年轻人以一种真正完全包容的方式开展工作具有重要意义。

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