Understanding the Experience of Non-Epileptic Seizures in Young People: A Multi-Perspectival Qualitative Analysis

Upstill, Alison (2025) Understanding the Experience of Non-Epileptic Seizures in Young People: A Multi-Perspectival Qualitative Analysis. Masters thesis, University of Wales Trinity Saint David.

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Abstract

Research Summary: Non-epileptic seizures, also known as psychogenic non-epileptic seizures (PNES) or functional seizures, can look like epilepsy or affect changes in behaviour, although there is no change in brainwave activity when a video-electroencephalogram (V-EEG) is carried out (Myers et al., 2022).This means that non-epileptic seizures are a physical response to psychological internal or external stress and are not epilepsy. Half of the people who go to accident and emergency with a severe seizure are later diagnosed with non-epileptic seizures (NHS, 2017) and the most affected are females in late adolescence or early adulthood (Reuber & Brown, 2017). Non-epileptic seizures have a negative impact on many aspects of the person’s life including education, employment and relationships. A lot of stigma is attached to the disorder, diagnosis can take years and the social consequences far-reaching. Explanations and treatment are inconsistent due to healthcare professionals’ lack of knowledge of the disorder (Jennum, Ibsen & Kjellberg, 2019; Peacock et al., 2023). There is limited research on non-epileptic seizures, and little is available on the experiences of young people between the age of 18-25 years from a multiple-perspective viewpoint and none in Wales, UK at all. Applied Research: A qualitative multi-perspective approach examined the experiences of non-epileptic seizures in young people, the perceptions of their parents, and the knowledge and understanding of professionals who work with them. Online semi-structured interviews took place, and transcriptions were analysed using thematic analysis. A systematic literature review was carried out to investigate previous literature about non-epileptic seizures. In conclusion, the experiences of young people and their parent/carers in this study echoed previous literature. The knowledge and understanding of the disorder by professionals working with young people in the health and well-being sector was limited and therefore support systems could not be adequately given. Key Findings: Themes developed from the interviews identified that young people and their families had inconsistent or no explanations of non-epileptic seizures. They educated themselves and then explained the disorder to educational staff and other health professionals. All aspects of young peoples and their families’ lives were negatively impacted by non-epileptic seizures including changes in work, isolation, inability to drive and additional mental health disorders including anxiety and depression. Young people developed better understanding of themselves, and the family was their main support system. National Health Service care after diagnosis was inadequate leaving families to pay privately for therapy. Therapists had limited knowledge of the disorder. Young people’s teachers and lecturers were all accommodating and made adaptations to educational access although they had no knowledge of the disorder. The professionals in this study all worked in the health and well-being sector. Four of the five professionals had little or no knowledge of non-epileptic seizures. There was little knowledge of first aid procedures for epilepsy and none for non-epileptic seizures, relying on the client to tell them what they needed. One professional could explain what non-epileptic seizures were but not the cause. Further research is needed on non-epileptic seizures in Wales, UK. Psychoeducation is reported to be of value in the reduction of seizures after diagnosis and support groups improve well-being for young people. Professionals working with young people in the health and well-being sector require training to improve knowledge and understanding of the disorder and therefore positive outcomes for young people.

Item Type:	Thesis (Masters)
Subjects:	B Philosophy. Psychology. Religion > BF Psychology L Education > L Education (General) R Medicine > R Medicine (General)
Divisions:	Theses and Dissertations > Masters Dissertations
Depositing User:	Victoria Hankinson
Date Deposited:	17 Jul 2025 08:38
Last Modified:	17 Jul 2025 13:55
URI:	https://repository.uwtsd.ac.uk/id/eprint/3832

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