Keeping Balance on a Moving Platform: A Qualitative Interview Study of Young Adults Living with Epilepsy and Implications for Neurological Nursing.

Background/

Objectives

Supporting everyday self-management is a central component of person-centered neurological nursing for young adults living with epilepsy. However, little is known about how young adults experience and negotiate everyday life with epilepsy during a developmental stage characterized by increasing independence and major life transitions. This study aimed to explore how young adults experience and negotiate everyday life with epilepsy.

Methods

A qualitative exploratory study informed by a hermeneutic approach was conducted to explore participants' experiences. Twelve young adults aged 18-29 years participated in individual virtual interviews. Interviews followed a semi-structured guide and were analyzed using reflexive thematic analysis to identify patterns across participants' experiences. The study was reported according to the Standards for Reporting Qualitative Research (SRQR).

Results

The analysis identified a main theme, Keeping balance on a moving platform, which captured how young adults experienced living with epilepsy as a continuous balancing act within an unpredictable condition. Participants described continuously balancing independence with vulnerability while managing seizures, cognitive challenges, and concerns related to safety and social participation. Familiar digital and non-digital tools supported everyday self-management by helping participants structure daily routines, compensate for cognitive difficulties, and maintain a sense of normality.

Conclusions

Living with epilepsy in young adulthood requires continuous adaptation to cognitive, emotional, and practical challenges that extend beyond seizure control. This study extends current knowledge by showing that self-management involves continuous negotiation between independence, vulnerability, and everyday participation rather than symptom control alone. The findings provide insights into person-centered neurological nursing by highlighting the importance of individualized support for managing cognitive challenges, everyday self-management, and transitions into education, employment, and family life.