“People just think that I’m tired all the time…but it’s so much more than that”: Exploring the experiences of education for adolescents living with narcolepsy

Berman-Jones, Ellyn 2026. “People just think that I’m tired all the time…but it’s so much more than that”: Exploring the experiences of education for adolescents living with narcolepsy. DEdPsy Thesis, Cardiff University. Item availability restricted.

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Abstract

Aims: This study aimed to develop an in-depth understanding of how adolescents living with narcolepsy experience and make sense of their education within the UK context, addressing a gap in qualitative research focused on this developmental period. Method: A qualitative design was adopted, informed by a critical realist ontology and phenomenological epistemology. Four adolescents aged 13-19 with a diagnosis of narcolepsy were recruited using purposive sampling. Data were generated through individual semi structured interviews conducted online to support accessibility and anonymity. Analysis: Data were analysed using interpretative phenomenological analysis (IPA), following an idiographic approach to explore each participant’s account in depth to construct Personal Experiential Themes, followed by a cross-case analysis to identify Group Experiential Themes. Findings: Three group experiential themes were constructed: (1) working against tiredness to stay engaged in school, (2) navigating misunderstanding and finding moments of safety, and (3) making sense of who they are while thinking about the future. Across accounts, experiences were shaped through the interaction between associated features of narcolepsy, school structures and social responses. Excessive daytime sleepiness disrupted engagement with learning while school routines often conflicted with fluctuating energy levels, leading to ongoing hidden efforts to remain engaged in education. Responses from others further shaped these experiences, with misunderstanding contributing to social and emotional strain and moments of understanding fostering a sense of relational safety. Adolescents also described negotiating their sense of self and future possibilities in relation to these experiences. Implications are discussed for educational psychologists and schools in promoting more responsive and inclusive support. Keywords: narcolepsy, education, adolescence, educational psychology, lived experience

Item Type:	Thesis (DEdPsy)
Date Type:	Completion
Status:	Unpublished
Schools:	Schools > Psychology
Date of First Compliant Deposit:	22 July 2026
Last Modified:	22 Jul 2026 14:09
URI:	https://orca.cardiff.ac.uk/id/eprint/188414

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