"It's Hard!": Adolescents' School Experience and Self-Management of Psychogenic Nonepileptic Seizures

Abstract

Adolescents with a type of conversion disorder called psychogenic nonepileptic seizures (PNES) experience many school, relationship, and health care struggles as they attempt to manage their mental health condition with PNES events that strikingly resemble epileptic seizures. Considered one of the top three neuropsychiatric problems, health care providers and school personnel remain ill-informed regarding how to care for adolescents with PNES. Because of the unique multidisciplinary approach needed to address adolescent PNES, school nurses are uniquely positioned to bridge health care and education systems. A review of literature examined the concept of school nurse selfmanagement support for PNES, existing school nurse-led mental health interventions, and the relationships between concepts for a conceptual framework guiding adolescent PNES research. This review of literature reveals an absence of adolescents’ perspective and school emphasis in PNES research. This study was designed to investigate adolescents’ experience attending school and self-managing PNES. This was accomplished through a qualitative content analysis of data generated from semi-structured interviews and magnitude coding of select quantifiable data. Data were obtained from 10 adolescents, 12 to 19 years of age, with current or recent in-person school attendance. The results indicate adolescents from the sample had school experiences that involved stress, bullying, accusations of faking seizures, and feelings of isolation or exclusion. Their mostly effective proactive selfmanagement activities included seeking protection, persevering in life despite PNES struggles, and progress monitoring through seizure tracking. Reactive activities of mixed effectiveness included coping responses to seizure warnings. School nurses, school personnel, family members, and peers served as both facilitators and barriers for PNES self-management. Adolescents also contributed information for three emerging themes— family-management, school-management, and illness representation. These findings reveal the difficulties of attending school and self-managing PNES and inform future PNES interventions to improve academic, mental health, and quality of life outcomes.