Inclusion and participation of children with epilepsy in schools: Views of young people, school staff and parents

Objective: 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. Methods: 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. Results: 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. Conclusions: School attendance difficulties for children with epilepsy can contribute to academic and socialemotional 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.