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Parents’ Perceptions Highlight Gaps in Supporting Children with Epilepsy in School

Parents’ Perceptions Highlight Gaps in Supporting Children with Epilepsy in School 1024 579 JoAnna Pendergrass, DVM

Discussions with parents of children with epilepsy revealed concerning gaps in school-based seizure education and care, underscoring the need for better lines of communication between medical teams, school personnel, and the children’s families.

 

A qualitative study led by Mary Kay Irwin, EdD, and Anup Patel, MD, FAAN, FAES, FCNS, at Nationwide Children’s Hospital reported that parents of children with epilepsy experience numerous challenges regarding their child’s school-based medical care and educational support.

Over 450,000 children in the United States have epilepsy and face learning deficits and other school problems. Additionally, other than school nurses, school personnel may not receive adequate seizure care education.

“The current study was born out of a groundswell of factors, including parents’ frustration and desire for more support,” says Dr. Irwin, senior director of School-Based Health at Nationwide Children’s.

Dr. Patel, neurologist and associate chief quality officer in the Center for Clinical Excellence at Nationwide Children’s, notes that a quality improvement (QI) project aimed at reducing emergency department (ED) visits for children with epilepsy revealed that school-based challenges and barriers contributed to these visits.

The researchers sought to explore how parents of children with epilepsy perceive their child’s educational experience, as well as identify barriers to receiving school-based seizure care and appropriate academic support. Study results were published in the Journal of Child Neurology.

The research team recruited 11 parents and assigned them to one of two 90-minute focus groups, according to whether their child had medically complex or non-medically complex epilepsy. Focus group facilitators asked questions such as how the epilepsy diagnosis has affected their family and whether their child has experienced any learning challenges.

“The parents were eager to tell their stories with the hope that doing so would lead to better outcomes for other children with epilepsy,” Dr. Irwin says.

Five central themes emerged from the focus groups:

  • Academic impacts
  • Lack of school resources
  • Lack of school support
  • Positive school support
  • Customized education support plans

Parents strongly perceived that a school was either unable or unwilling to provide adequate resources and support for their child. Additionally, they were concerned about their child not graduating on time and how that would affect the child’s emotional well-being and the entire family.

Several parents also described the emotional toll of having to advocate for their child continually.

“When a child is struggling and their family is exhausted from fighting to get care for them, people tend to finger-point and find fault. Often, no one is doing anything hurtful on purpose,” Dr. Irwin explains.

Drs. Irwin and Patel say that the study’s findings highlight the knowledge gap regarding how to care for children with seizures in the school setting, along with the need to partner with schools and epilepsy advocacy groups to provide epilepsy education to all school personnel.

Dr. Irwin notes that, although significant clinical advances have allowed children with medical complexities to survive, these children face learning challenges due to ongoing health issues that schools are sometimes not adequately equipped to manage.

She recommends a better understanding of learning challenges in children with epilepsy, along with continued partnerships with schools to help these children thrive academically.

“We have a lot of learning opportunities for schools and medical providers to work together to give kids the best chance to maximize their learning environment and stay in school, despite other challenges they may have,” Dr. Patel says.

 

Reference

Irwin MK, Patel AD, Palme H, Cohen DM, Jones C, Skinner D. Parental perceptions of school experiences for children with epilepsy. Journal of Child Neurology. 2025;40(5):332-341.

Image credit: Adobe Stock

About the author

JoAnna Pendergrass

JoAnna Pendergrass, DVM, is a veterinarian and freelance medical writer in Atlanta, GA. She received her veterinary degree from the Virginia-Maryland College of Veterinary Medicine and completed a 2-year postdoctoral research fellowship at Emory University’s Yerkes Primate Research Center before beginning her career as a medical writer.

As a freelance medical writer, Dr. Pendergrass focuses on pet owner education and health journalism. She is a member of the American Medical Writers Association and has served as secretary and president of AMWA’s Southeast chapter.

In her spare time, Dr. Pendergrass enjoys baking, running, and playing the viola in a local community orchestra.

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