Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK.
Child Development Centre, Crawley Hospital, West Green Drive, Crawley RH11 7DH, West Sussex, UK.
Epilepsy Behav. 2021 Sep;122:108179. doi: 10.1016/j.yebeh.2021.108179. Epub 2021 Jul 10.
To gain an understanding of the views of young people with epilepsy, their parents and school staff regarding educational and therapeutic provision, understanding of epilepsy and seizure management in schools.
School-aged children (n = 20) with 'active epilepsy' (taking Anti-Seizure Medications (ASMs) for epilepsy), their parents (n = 68), and school staff (n = 56) were interviewed or completed bespoke questionnaires. In addition, all participating children underwent psychological assessment including measures of behavior and cognition.
Only 15% of participating children had received psychological support despite 60% scoring within the at-risk range on a measure of behavioral and emotional difficulties. More than half of the responding children reported that some of their teachers and friends did not know that they had epilepsy. A significant minority of parents (32%) did not feel that the child's transition from preschool to primary, or primary to secondary school was managed well. Knowledge of the child's epilepsy was felt to be significantly better in special schools than mainstream schools according to both parents and school staff. Staff in special schools perceived they were more knowledgeable about the child's ASMs and changes to ASMs than staff in mainstream schools. Staff in special schools were significantly more likely to have received training on general aspects of epilepsy, seizure management, and impacts on learning and/or behavior. Parental interviews indicated difficulties accessing educational and therapeutic supports. Parents often felt that they had to drive the process to gain supports themselves. They also reported limited professional support, and inadequate communication between themselves and the school and school staff and medical/therapeutic professionals regarding their child's needs. Parents would like more school staff to recognize the impacts of epilepsy on learning and behavior and to support their child more holistically. Many parents wanted more resources for assessment and therapeutic provision in relation to their child's learning, behavior, and emotions.
Knowledge of epilepsy is felt by parents and staff to be significantly better in special schools compared with mainstream schools. Parents highlighted the need for increased knowledge of the impacts of epilepsy on learning and behavior and perceived a need for more resources for assessment of these difficulties.
了解患有癫痫的年轻人、其父母和学校工作人员对学校教育和治疗服务、对癫痫的认识以及癫痫发作管理的看法。
对 20 名学龄期（正在服用抗癫痫药物（ASM）治疗癫痫）癫痫患儿及其父母（n=68）和学校工作人员（n=56）进行访谈或填写专门的调查问卷。此外，所有参与的儿童都接受了心理评估，包括行为和认知方面的评估。
尽管 60%的儿童在行为和情绪困难方面的评估中处于风险范围内，但只有 15%的患儿接受了心理支持。超过一半的患儿报告说，他们的一些老师和朋友不知道他们患有癫痫。少数家长（32%）认为孩子从学前班过渡到小学，或从小学过渡到中学的过程管理不善。根据父母和学校工作人员的反馈，特殊学校对孩子癫痫的了解明显优于主流学校。特殊学校的工作人员认为，他们对孩子的 ASM 及其变化的了解明显优于主流学校的工作人员。特殊学校的工作人员接受过一般癫痫知识、癫痫发作管理以及对学习和/或行为的影响方面的培训的可能性明显更高。家长访谈表明，在获取教育和治疗支持方面存在困难。父母往往觉得他们必须自己推动这个过程，以获得支持。他们还报告说，他们得到的专业支持有限，以及他们与学校和学校工作人员以及医疗/治疗专业人员之间在孩子需求方面的沟通不足。家长希望有更多的学校工作人员认识到癫痫对学习和行为的影响，并更全面地支持他们的孩子。许多家长希望在孩子的学习、行为和情绪方面有更多的资源用于评估和治疗。
与主流学校相比，家长和工作人员认为特殊学校对癫痫的认识明显更好。家长强调需要增加对癫痫对学习和行为的影响的了解，并认为需要更多的资源来评估这些困难。
