Adolescents' qualitative expressions of functional seizure illness representation

Abstract

Introduction: Adolescents with functional (nonepileptic) seizures experience challenges self-managing this mental health condition, especially at school where adolescents experience stress, bullying, accusations of faking seizures, and stigma. According to the Common Sense Model of Self-Regulation, adolescents' self-management decisions and outcomes may be shaped by their functional seizure illness representation (perceptions or mental depictions formed in response to a health threat). However, current research has only explored adults' functional seizure illness representation; little is known about adolescents. The aim of this study was to explore adolescents' expressions of illness representation characteristics (identity, cause, consequence, controllability/curability, and timeline) when describing their experience attending school with functional seizures.

Methods: We analyzed qualitative data from 10 adolescents (age 12-19 years, 100% female) from the United States with functional seizures. Data collection occurred in 2019 via semistructured interviews about adolescents' school experiences. The theme of illness representation emerged without prompting adolescents to discuss illness representation or its characteristics. This study involved inductive analyses and magnitude coding of adolescents' unsolicited expressions of illness representation.

Results: All five characteristics of illness representation were mentioned by adolescents; however, not all characteristics were mentioned by all adolescents. Adolescents' expressions of illness representation characteristics resulted in the following descriptive themes: clashing labels and mind-body façade for identity, stress for cause, gains and losses for consequence, control/lack of control for controllability/curability, and no end of seizures in sight for timeline.

Conclusions: Adolescents' expressions of illness representation reveal perceptions considered "threatening" within the Common Sense Model, especially those expressing lack of controllability/curability and condition timelines with no end in sight. The Common Sense Model offers a framework for understanding how these threatening perceptions may impact health and academic outcomes or change with intervention.