Understanding Children’s experiences of Long-Term Video-Electroencephalography monitoring in Drug-Resistant epilepsy

Abstract

Objective

To explore children’s experiences of undergoing long-term video-electroencephalography monitoring (LTVEM) as part of the diagnostic process for epilepsy. Methods: This study employed a qualitative research design, specifically utilizing an exploratory approach to gain empirical knowledge and deep understanding of children’s experiences. Semi-structured interviews were conducted with 18 children aged 8–17 years who had recently undergone LTVEM. Data were analyzed using content analysis. Results: This study is the first to empirically examine children’s perspectives on LTVEM. Three main categories were identified: Hope for improvement as a motivating factor, The importance of psychosocial safety, and Physical and psychological discomfort. Contrary to expectations that children might find monitoring 24/7 intrusive or distressing, participants described a strong motivation to undergo the procedure, embedded in the hope of receiving a diagnosis and achieving seizure control. This sense of purpose outweighed the short-term discomforts of hospitalization, including physical restraints, sleep disruptions, and emotional distress. Children viewed LTVEM as a necessary and even empowering step toward better health, demonstrating considerable trust in the healthcare system. Notably, being accompanied by a guardian was consistently described as essential for emotional safety, regardless of the child’s age. Significance: These findings offer critical insight into the experiences and coping strategies of children undergoing LTVEM. Understanding these perspectives can inform clinical practice by promoting child-centered care and improving the planning of pediatric LTVEM admissions. The results also support the development of national guidelines that reflect the voices and needs of children, ensuring more supportive, individualized care experiences.