Impact of epilepsy on learning and behaviour and needed supports: Views of children, parents and school staff.

BACKGROUND: There is limited data on the views of young people with epilepsy, their parents and school staff regarding the impact of epilepsy on learning and behaviour in school. The purpose of the study was to gain an understanding of the impact of epilepsy on learning and behaviour and needed supports according to children with epilepsy, their parents and supporting school staff.

METHODS: 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 surveys. The quantitative data was analysed using descriptive statistics and responses were compared for children attending mainstream and special schools using chi-square analyses. The answers to open questions were answered using thematic analyses.

RESULTS: The majority (53%) of children with epilepsy felt that epilepsy affected their learning including aspects such as memory, attention and concentration but also physical and emotional wellbeing including increased tiredness and lowered self-confidence. In addition, children brought up possible negative aspects of taking ASMs including increased irritability and emotional reactivity. The children also mentioned that epilepsy in school was associated with stigma and restrictions. The majority (85%) of parents agreed that epilepsy affects the child's learning/behaviour while more staff agreed that epilepsy affects learning (61%) than behaviour (45%). Most parents agreed that that their child's school provided the appropriate resources to support their child's learning (79%) and 72% agreed that they were satisfied overall with the support their child received at school. However, parents of children attending special schools were more likely to agree that the child's school provided appropriate resources to support their child's learning (p = 0.034) and be satisfied with the support their child received in school (p = 0.02), than parents of children attending mainstream schools. With respect to current or desired supports, analysis of the children's responses indicated that they want access to supportive environments outside the classroom, accommodations in tests/exams and increased support from trusted adults. Parent responses included approaches that promote child wellbeing, environmental accommodations, a high ratio of adult support and a consideration of the child's communication needs. Staff views regarding optimal strategies included a high level of adult support for the child, environmental accommodations, use of multimodal learning, adapting communication and approaches that promote psychological wellbeing.

CONCLUSIONS: The majority of children perceived that epilepsy affected their learning and behaviour in school including leading to specific learning difficulties, but also negative impacts on emotional and physical wellbeing. Levels of parental satisfaction with supports were significantly higher in special schools compared with mainstream schools. Children, parents and staff highlighted a number of supports which they felt can support the child with epilepsy's learning but also emotional wellbeing.