Students living with psychogenic non-epileptic seizures (PNES)-a new study

For almost 20 years, I have been a school nurse. During one of my first years as a school nurse, I met a student with what health care providers were then calling pseudoseizures. While many school personnel were very supportive of this student, there were just as many who were NOT. I heard comments about this student faking seizures. I saw the student miss many days of school. And I watched the student fall farther and farther behind academically. The next several years brought more students with this diagnosis and many more instances of what appeared to be a lousy school experience. When I returned to school to further my own education, my focus was to learn what I could to make the school experience better for future students with what many now call functional seizures (or psychogenic nonepileptic seizures).

Since May 2018, I have committed my research training and career to understanding and supporting adolescents with functional seizures. I began by learning how school nurses support students with functional seizures. In this study, school nurses described the role they have played in caring for students with functional seizures (A. Tanner et al., 2022). These compassionate school nurses described taking action to address student needs, including:

• Developing action plans
• Coaching students and school personnel
• Communicating with health care providers, parents, and school personnel about functional seizure triggers, appropriate responses to seizure warnings or events, and post-event debriefing
• Helping students build coping and relationships skills
• Providing a safe place for practicing coping skills
• Encouraging commitment to attending mental health care appointments

My next study involved interviewing adolescents with functional seizures regarding their experience attending school. I learned that while some school nurses were incredibly supportive, several adolescents in the study described instances in which school nurses, school personnel, and peers were NOT supportive. In fact, adolescents detailed school experiences that included being bullied by peers, harassed by school personnel, stressed by academic struggles and school absences, excluded from learning and relationship opportunities, and accused of faking seizure events (A. L. Tanner et al., 2022).

Now, I’d love to learn more about how these school experiences relate to adolescents’ academic performance, school attendance, mental health, functional seizure severity, and quality of life. To this end, I am conducting a research study that involves adolescents and their parent/guardian completing a confidential online survey. The results of this survey will help a team of caring experts develop care plans, educational opportunities, interventions, and policy guidance. If you know someone 10 to 17 years old with functional seizures (also known as PNES) who meets the criteria on the study flyer, we would love to learn from them. If you yourself qualify to be a part of the study, please consider taking this survey with your parent/guardian! Both parents and adolescents will receive gift cards as a thank you.

To apply: andrtann@iu.edu

References

Tanner, A. L., von Gaudecker, J. R., Buelow, J. M., Oruche, U. M., & Miller, W. R. (2022). “It’s hard!”: Adolescents’ experience attending school with psychogenic nonepileptic seizures. Epilepsy & Behavior, 132, 1–8. https://doi.org/10.1016/j.yebeh.2022.108724

Tanner, A., von Gaudecker, J., Buelow, J. M., & Miller, W. R. (2022). Hybrid concept analysis of self-management support: School nurses supporting students with psychogenic nonepileptic seizures. The Journal of School Nursing, 38(5), 428–441. https://doi.org/10.1177/10598405211053506