, results of a small study suggest.
The school experience of teens with PNES is overwhelmingly negative, study investigator Andrea Tanner, PhD, a postdoctoral fellow at Indiana University School of Nursing, Indianapolis.
She hopes this research will spur a collaborative effort between students, schools, families, and health care providers “to develop an effective plan to help these adolescents cope, to manage this condition, and hopefully reach seizure freedom.”
The findings were presented at the annual meeting of the American Epilepsy Society.
Although psychogenic seizures resemble epileptic seizures, they have a psychological basis and, unlike epilepsy, are not caused by abnormal electrical brain activity.
While the school experience has previously been identified as a source of predisposing, precipitating, and perpetuating factors for PNES, little is known about the school experience of adolescents with the disorder and the role it may play in PNES management, the investigators noted.
During her 20 years as a school nurse, Dr. Tanner saw firsthand how school staff struggled with responding appropriately to teens with PNES. “They wanted to call 911 every time; they wanted to respond as if it [were] an epileptic seizure.”
For the study, she interviewed 10 teens with PNES, aged 12 to 19 years, whom she found mostly through Facebook support groups but also through flyers. All participants had undergone video EEG and been diagnosed with PNES.
From the interviews, Dr. Tanner and colleagues conducted a qualitative content analysis and uncovered “overarching” themes.
A main theme was stress, some of which focused on bullying by peers or harassment by school personnel, much of which was related to accusations of the children “faking” seizures to get attention, said Dr. Tanner.
Some teens reported being banned from school events, such as field trips, out of concern they would be a “distraction,” which led to feelings of isolation and exclusion, said Dr. Tanner.
Research points to a growing incidence of PNES among adolescents. This may be because it is now better recognized, or it may stem from the unique stressors today’s teens face, said Dr. Tanner.
Adolescents discussed the pressures they feel to be the best at everything. “They wanted to be good in athletics; they wanted to be good in academics; they wanted to get into a good college,” said Dr. Tanner.
Some study participants had undergone psychotherapy, including cognitive-behavioral therapy, and others had investigated mindfulness-based therapy. However, not all were receiving treatment. For some, such care was inaccessible, while others had tried a mental health care intervention but had abandoned it.
Although all the study participants were female, Dr. Tanner has interviewed males outside this study and found their experiences are similar.
Her next research step is to try to quantify the findings. “I would like to begin to look at what would be the appropriate outcomes if I were to do an intervention to improve the school experience.”
Her message for doctors is to see school nurses as a “partner” or “liaison” who “can bridge the world of health care and education.”