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Epilepsy research project examines teacher knowledge, confidence

October 22, 2009

Jessie Siemens was a smart first grader who was disciplined for misbehaving and daydreaming as she fell further and further behind her peers. Then a summer school teacher noticed Jessie frequently “zoned out” and suggested her parents get her medical attention.

Jessie was diagnosed with absence seizures and treated with medication. Unfortunately, she’d already lost her crucial first year of school. Now in third grade, she’s catching up with her classmates through private tutoring, an individualized education plan and teachers who are aware of her learning needs.

“It was an educator who pointed out there was a problem,” says mom Nancy Siemens. “If more teachers across the board had knowledge of this it would really help. (The summer school teacher) knew enough to at least tell us to get it addressed and not just assume it was a behavioral issue.”

Cases such as Jessie’s are the impetus of an epilepsy research project by Arizona State University associate professor David Wodrich. With a grant from the Epilepsy Foundation of America, Wodrich is working to determine what teachers know about seizure disorders and their confidence in teaching children with epilepsy.

The study examines the theory that teachers who understand epilepsy and are confident about teaching children with epilepsy can better deal with the risks, embarrassment and stress associated with seizures in the classroom. It also will help identify how epilepsy affects student learning and attention.

“Nobody knows whether this idea holds up,” Wodrich says. “This is the first step in trying to figure out if that’s true. If it is true, then we want to have a way of informing teachers to ensure they are confident. This grant is designed to create a way to objectively measure how much teachers know and how confident they are.”

Research indicates that children and teens with epilepsy risk peer, family and school problems, but there has been little research about the educational consequences of epilepsy aside from these psychosocial effects. While some work has focused on teacher misconceptions or bias, nothing has specifically addressed their factual knowledge about epilepsy.

Children with epilepsy may take several medicines, which have varying side effects and can impact attention and the ability to process information. They also can have underlying neurological conditions that affect memory, organizational skills and the ability to focus. Without knowledge of these issues and confidence in teaching these children, the question remains how accommodating teachers can be to learning in students with epilepsy. It also is understandable why some teachers may be anxious about the prospect of teaching a student with epilepsy.

This study is just one part of a bigger set of studies on the educational morbidity of chronic illness on students, including diabetes and asthma. Wodrich, a former director of psychology at Phoenix Children’s Hospital, is working with pediatric epileptologists Randa Jarrar and Jeffrey Buchhalter at Phoenix Children’s Hospital to develop an accurate method of measuring teacher knowledge and confidence.

“We’re trying to match the educational piece with the medical piece of the puzzle so we can better understand what’s going on with these kids,” Wodrich says. “One reason there are not more studies of this kind is that physicians don’t have contact with educators, and educational researchers don’t have the medical contacts. It takes people who can bridge that gap.”

The initial study will determine and compare knowledge and confidence of teachers who have taught a student with epilepsy as well as those who have not. Researchers then will be able to use the information to develop future projects that will enhance their knowledge and bolster confidence. Since children spend most of their waking hours at school, Jarrar says it's important for teachers to recognize how epilepsy affects student learning.

“They can have attention problems, specific learning disabilities, hyperactivity, or they can have trouble because of missed school days because of seizures. They might get behind or already be behind and get even further behind,” Jarrar says. “They can have social problems at school as well with peer interaction and feeling different from other children because of the seizures.”

While it is not reasonable to ask a teacher to determine if a child is struggling because of a medication side effect, she says it is important for the teacher to understand the potential for problems and recognize the signs of seizures.

“There are many different types of seizures. Motor seizures are easy to recognize, such as jerking and twitching,” Jarrar says. “But with other types the teacher may think the child is daydreaming or not paying attention. If there are odd movements, she may think the child is being silly. Waving hands or smacking their lips is not typical behavior.”

Jarrar says teachers also need to know how to react during a seizure. “One cannot interrupt the activity by saying, ‘Johnny, stop what you are doing.’ It’s involuntary.”

She said teachers who recognize these situations in the classroom and report them to parents can help physicians better treat the epilepsy or identify learning disabilities or co-morbid conditions such as attention deficit disorder. Medications can be adjusted to reduce breakthrough seizures that interfere with learning.

Through the frustration and worry, the Siemens have been able to get Jessie the educational assistance she needs to get her back on track, especially in reading.

“She lost a lot of valuable time,” Nancy says. “Now that she’s starting to read, it’s like a whole new world is opening up to her. It should have been opening up to her two years ago, not now.”