Barriers students with epilepsy and their caregivers face regarding school participation and seizure management...

Children with epilepsy often face barriers to school participation and appropriate seizure management. This study explored caregiver-reported challenges related to seizure action plans (SAPs), rescue medication access, and school inclusion.

A 34-item survey, including items from the validated Brief School Needs Inventory (BSNI), was administered to caregivers of school-aged children with epilepsy receiving care at a tertiary children's hospital. Descriptive statistics and logistic regression analyses examined seizure-related experiences and school-level barriers, stratified by BSNI-assessed educational risk.

Among 162 caregiver respondents, 50.6% reported their child had experienced a seizure at school. While 79% of students had a SAP in place, 11.7% did not. One-quarter of students required rescue medication at least annually, and 25.9% of caregivers were unsure if it could be administered in a timely manner at school. Additionally, 27.2% of students were excluded from school activities and 34% faced bus transportation barriers. Logistic regression showed students with high BSNI risk were over six times more likely to face transportation-related barriers (OR = 6.12, p < 0.001) and nearly five times more likely to be excluded from activities (OR = 4.91, p < 0.01) than peers with low risk.

Despite federal protections and emerging state-level legislation, many students with epilepsy experience preventable educational and safety-related barriers. Improved standardization of SAPs, staff training, and care coordination between providers and schools are needed to reduce disparities and support full participation for students with epilepsy.