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Overview

The Epilepsy Foundation, a national organization with chapters in every state, focuses primarily on advocacy and education. The Foundation is dedicated to increasing awareness and providing support for individuals affected by epilepsy through support groups, producing information for patients and developing resources and education for clinicians. 

Project Background

The Epilepsy Foundation has implemented a comprehensive "Seizure First Aid and Recognition Certification" program, some of which focuses particularly on the training of school personnel. This initiative aims to address widespread misconceptions about epilepsy and improve the ability of individuals to respond effectively during a seizure. The program includes various formats, such as online on-demand courses and in-person training, tailored for different audiences, including general school personnel and school nurses. The motivation for developing this particular program stemmed from studies indicating that more than half of people lacked confidence or knowledge in assisting someone experiencing a seizure. Recognizing this gap, The Epilepsy Foundation developed an interactive and easy-to-understand course to enhance knowledge and ensure the safety of children with epilepsy in various community settings.

Data/Outcomes

Since its inception in January 2020, the program has shown significant success with over 73,860 individuals having completed the training, with 436 individuals having completed the training in Spanish. The training has demonstrated statistically significant improvements in knowledge and preparedness among participants, as evidenced by pre- and post-test results. The online on-demand format, introduced during the COVID-19 pandemic, has greatly expanded the program's reach while maintaining the effectiveness of the training.

Recommendations

For organizations looking to replicate this practice, several key steps are recommended:

  • Conduct thorough research to understand the specific needs and misconceptions related to epilepsy in your target audience.
  • Engage a diverse group of individuals (physician, parents, patients, and teachers) to inform the planning and implementation of the trainings.
  • Develop interactive and accessible training materials that cater to various educational backgrounds.
  • Offer flexible training options, including both online and in-person formats, to maximize reach and participation.
  • Implement pre- and post-tests to measure the effectiveness of the training and continuously improve the program based on feedback.
  • Identify and engage unique groups to serve as instructors (in this experience college students who tend to have more time and are eager to learn).
  • Identify opportunities to motivate individuals to participate in the training (for example, offering continuing education credits).

Sustainability and Challenges

The primary challenge faced was the onset of the COVID-19 pandemic, which necessitated a rapid shift to online training formats. While initially met with skepticism, the online courses proved to be just as effective as in-person training and allowed for a significant increase in participation by increasing accessibility. The program is sustained through funding and collaboration with the CDC, which provides both financial support and regulatory guidance. Continuous feedback from individuals with epilepsy and their families, as well as the foundation's extensive support network, ensures the program remains relevant and effective.

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Last Updated

07/14/2025

Source

American Academy of Pediatrics