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

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.