Epilepsy

Epilepsy

Epilepsy

Coordinated Support System for Students with Epilepsy (CSSSE)

Program Overview

Children spend a significant amount of time in school. Schools present an opportunity to support students with epilepsy to increase their self-management, address physical and social needs, and provide training needed to help them progress through school and into adulthood. School nurses play a critical role in ensuring that students with epilepsy are safe in school by providing chronic disease management, educating the school community on seizure safety, and bridging the gap between the school, students, and underutilized community-based services. NASN’s Coordinated Support System for Students with Epilepsy (CSSSE) program will increase the capacity of school nurses to serve as the linchpin that binds the work together and coordinates efforts to support the needs of students with epilepsy during school and as they transition out of high school.

NASN’s CSSSE program is grounded in the evidence-based concept of strategic multi-sectoral community coalition-building that brings key stakeholders together to coordinate and address the local needs of a population (Janosky et al., 2013). Critical stakeholders in this effort include state and regional level epilepsy resources and organizations; local community resources that address the social needs caused by social determinants of health (SDOH); and creators of school and district culture and policies that address epilepsy crises, promote self-management, and create a culture of inclusion to reduce stigma associated with epilepsy.

Critical Project Components

1. A national Advisory Group consisting of national organizations that will help identify state and regional epilepsy resources and connect them with NASN’s state school nurse affiliate chapters to form state school epilepsy teams. 

2. Epilepsy School Nurse Navigators (ESNN), school nurse leaders who can help bridge the gap between the state school epilepsy team, epilepsy resources, and school nurses practicing in the targeted local school districts. A lead school nurse has been identified for each of the three targeted states: Indiana, South Carolina, and West Virginia. 

3. Evidence-based Training, Toolkits, and Resources to build school nurses capacity related to seizure management, addressing SDOH, building coordinated coalitions, and fostering a culture of health and safety. Year 1 training was presented by the Epilepsy Foundation at NASN’s annual conference (June 2022) – Seizure Training for School Nurses. Year 2, Incorporating Multi-Tiered System of Support into School Health Services to Promote Health Equity training was developed and released. The Epilepsy Foundation Trainings for school nurses were shared and promoted.

Advisory Board 

Organizations

American Association of Neurology Nurses
CDC Epilepsy Program
Child Neurology Foundation
Epilepsy Alliance of Louisiana
Epilepsy Foundation of America, Alabama Chapter
Northeastern University, Bouve College of Health Sciences
Dravet Syndrome Foundation

Epilepsy Experts Subject Matter

Patricia Osborne Shafer, RN, MN, FAES
Mary Nasuta MS, BSN, RN, NCSN
Mary Thompson, PhD, CPNP-PC, RN

Parent Representative

Janet Dailey BA

Health Equity Expert (NASN)

Deborah D’Souza-Vazirani, DrPH MHSA

Contact Our Team

Elizabeth Clark, Nursing Education and Practice Specialist

Stephanye White, Program and Project Specialist

Participating State Resources

To be released soon from: Indiana | South Carolina | West Virginia

This web page is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services(HHS) as part of a financial assistance award totaling $300,000 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official.

Page launched April 2023.