Research Department, Young Epilepsy, Lingfield, Surrey, RH7 6PW, UK; Great Ormond Street Hospital for Children NHS Trust, Great Ormond Street, London WC1N 3JH, UK.
Child Development Centre, Crawley Hospital, West Green Drive, Crawley, RH11 7DH, West Sussex, UK.
Seizure. 2021 Dec;93:34-43. doi: 10.1016/j.seizure.2021.10.007. Epub 2021 Oct 10.
To gain an understanding of the views of children with epilepsy, their parents and staff regarding inclusion and participation of children with epilepsy in school.
During the study period, 136 children with 'active' epilepsy (taking anti-seizure Medications (ASMs) for epilepsy), were identified in the study area and of these 68 (50% of those eligible) families agreed to participate. Children (n = 20) with 'active epilepsy' their parents (n = 68) and staff (n = 56) were interviewed or completed surveys. The quantitative data were analysed using descriptive statistics and chi-square analyses. The answers to open questions were analysed using thematic analyses.
Staff in mainstream schools were more concerned about the child's attendance than staff in special schools (p = 0.008).Parents and school staff cited a number of negative aspects of the child's attendance difficulties including social-emotional and academic aspects. The majority of parents and staff felt that young people with epilepsy were included in school to the same extent as peers. Parents were however, significantly less likely than staff to agree that children were included in all playground activities (p = 0.045). Parents of children in special schools were more likely to agree that their child was included in school than parents of children attending mainstream schools (p = 0.041). Thematic analysis revealed that parents felt that their child could be excluded in school due to staff decisions, child's own choice and peer led exclusion. The majority of children (64%) and parents (56%) agreed that the child with epilepsy was restricted from doing things their peers could do because of their epilepsy. While more than half of children with epilepsy (63%) reported that they had been bullied, most did not attribute this bullying to having epilepsy. Parents were more likely to agree that their child was bullied because of their epilepsy (p = 0.035) and non-epilepsy reasons than staff (p<0.001). Parents of children with epilepsy attending mainstream schools were more likely to agree that their child was bullied because of their epilepsy (p = 0.017) and non-epilepsy reasons (p = 0.026), compared to parents of children with epilepsy attending special schools.
School attendance difficulties for children with epilepsy can contribute to academic and social-emotional difficulties. Most parents and teachers feel that children with epilepsy are included in classroom activities to the same extent as peers. Children with epilepsy and their parents believe that they are more restricted in non-classroom activities compared with their peers. Difficulties with participation, friendships and bullying for children with epilepsy may be due to presence of other conditions as opposed to epilepsy per se. There is a need to increase understanding of the wide ranging impact of epilepsy on school life in order to enhance attendance and inclusion and to reduce bullying.
了解癫痫患儿、其父母和工作人员对癫痫患儿在学校中融入和参与的看法。
在研究期间，在研究区域中确定了 136 名患有“活动性”癫痫（正在服用抗癫痫药物（ASMs）治疗癫痫）的儿童，其中 68 名（符合条件者的 50%）家庭同意参与。对患有“活动性癫痫”的儿童（n=20）、其父母（n=68）和工作人员（n=56）进行了访谈或完成了调查。使用描述性统计和卡方分析对定量数据进行分析。使用主题分析对开放式问题的答案进行分析。
主流学校的工作人员比特殊学校的工作人员更关心孩子的出勤率（p=0.008）。父母和学校工作人员列举了孩子出勤率困难的一些负面影响，包括社交情感和学业方面。大多数家长和工作人员认为，癫痫青少年的融入程度与同龄人相同。然而，与工作人员相比，父母明显不太可能同意孩子参加所有操场活动（p=0.045）。特殊学校儿童的家长比主流学校儿童的家长更有可能同意孩子在学校中得到了包容（p=0.041）。主题分析显示，父母认为，由于工作人员的决定、孩子自己的选择和同伴的排斥，孩子可能会在学校中被排斥。大多数儿童（64%）和家长（56%）同意，由于癫痫，孩子不能做同龄人能做的事情。尽管超过一半的癫痫儿童（63%）报告说他们曾受到过欺凌，但大多数人并不认为这是因为他们患有癫痫。与工作人员相比，父母更有可能认为孩子因癫痫（p=0.035）和非癫痫原因而受到欺凌。与特殊学校的儿童相比，在主流学校就读的癫痫儿童的父母更有可能同意孩子因癫痫（p=0.017）和非癫痫原因（p=0.026）而受到欺凌。
癫痫患儿的就学困难可能会导致学业和社交情感困难。大多数家长和教师认为，癫痫患儿在课堂活动中的融入程度与同龄人相同。癫痫患儿及其家长认为，与同龄人相比，他们在非课堂活动中受到的限制更多。癫痫患儿在参与、友谊和欺凌方面的困难可能是由于其他疾病引起的，而不是癫痫本身。有必要提高对癫痫对学校生活的广泛影响的认识，以提高出勤率和包容性，并减少欺凌现象。
