Utrzymanie równowagi na poruszającej się platformie: jakościowe badanie wywiadów z młodymi dorosłymi żyjącymi z epilepsją
Keeping Balance on a Moving Platform: A Qualitative Interview Study of Young Adults Living with Epilepsy
W skrócie
[Preprint - wstępne wyniki] Badanie pokazuje, że młodzi dorośli z epilepsją postrzegają życie jako ciągłą grę balansu między chęcią niezależności a świadomością własnej podatności na napady. Aby sobie radzić, wykorzystują różne narzędzia cyfrowe i tradycyjne, które pomagają im w codziennych czynnościach i utrzymaniu poczucia normalności. Wyniki sugerują, że wspieranie pacjentów powinno skupiać się nie tylko na kontroli napadów, ale na całościowym wsparciu ich niezależności i uczestnictwa w życiu społecznym.
Oryginalny abstract (angielski)
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. 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. 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 supporting self-management and developmental transitions living with epilepsy.