School-Based Seizure Action Plan (SAP-I) for Children with Epilepsy in India: Development within the TELE–ESSI Framework

Background: Epilepsy affects ~6 to 12 million individuals in India, with school-aged children comprising a significant proportion of this population. The prevalence among school-going children is estimated at 6 to 10 per 1,000 students. Despite this considerable burden, India lacks a standardized, school-oriented seizure action plan (SAP) to guide appropriate responses in educational settings. This gap in structured emergency planning may lead to inadequate or delayed seizure management, increased morbidity, and heightened stigma. To address this need, a multicentric, ICMR-funded initiative was undertaken as part of the “Epilepsy Smart School” project to develop and validate a culturally appropriate, linguistically inclusive, and clinically relevant SAP for use in Indian schools.

Objective: This article aimed to design and validate a comprehensive and reliable seizure action plan tailored for school-aged children with epilepsy in the Indian context.

Methods: A multicentric, cross-sectional, facility-based study was conducted across three sites in India using a three-phase approach. In Phase I, a total of 112 unique items were generated through free listing exercises with stakeholders, including healthcare professionals, caregivers, and educators. These items were prioritized using Smith’s Salience Score to identify key domains for inclusion in the SAP.

In Phase II, a structured content validation was performed using the Delphi technique. Two rounds of Delphi consensus were conducted with a panel of experts comprising neurologists, pediatric neurologists, epileptologists, and pediatricians. Each item was reviewed for relevance, clarity, and applicability, ultimately resulting in a refined list for the preliminary version of the SAP.

Phase III involved a rigorous validation protocol assessing face validity, content validity, construct validity, and contextual relevance in school settings. The plan was then pilot-tested across selected institutions. Following successful validation, the finalized SAP was translated into four additional Indian languages to ensure accessibility and usability across diverse regions and linguistic groups.

Results: Of the 112 items initially generated, 90 items were retained in the final seizure action plan. The plan demonstrated excellent internal consistency, with a Cronbach’s α of 0.79, indicating high reliability. The finalized SAP includes 11 items under demographic details, 1 item (with 3 sub-items) for emergency contact information, and 4 items related to healthcare and hospital information. Medical details are captured through six items, while seizure information is covered in three items. The domain of seizure triggers includes 10 items, and seizure symptoms and response measures are addressed through 12 items. Seizure description encompasses 14 items, while considerations for participation in physical activities are captured through two items. Medication and treatment protocols consist of four items, and first aid and emergency response guidance is detailed across 12 items. Emergency help and ambulance services are addressed in five items, and post-seizure recovery management is covered through six items. Finally, the seizure log and data collection are represented by three items. The SAP was successfully translated into five Indian languages, further enhancing its potential for nationwide adoption.

Conclusion: This study has led to the development and validation of a structured, reliable, and context-sensitive seizure action plan for school-aged children with epilepsy in India. The plan is designed to assist educators, caregivers, and healthcare professionals in providing timely and appropriate care during seizure episodes in school settings. With its strong psychometric properties and multilingual availability, the SAP is positioned to become a critical tool for improving seizure preparedness and response in Indian schools, thereby promoting health, safety, and inclusivity for children living with epilepsy.

Publication History

Article published online:
24 October 2025