ORIGINAL RESEARCH article
Front. Psychol.
Sec. Health Psychology
'It's hard to feel this way every single day': Patients' Perspectives on the Emotional Burden of Narcolepsy
Provisionally accepted
- 1Faculty of Social and Economic Sciences, Comenius University, Bratislava, Slovakia
- 2Institute of Applied Psychology, Faculty of Social and Economic Sciences, Comenius University, Bratislava, Slovakia
- 3Department of Health Psychology and Research Methodology, Faculty of Medicine, University of Pavol Jozef Šafárik, Kosice, Slovakia
- 4Social Health Institute, Palacký University, Olomouc, Olomouc, Olomouc, Czechia
- 5Department of neurology, Faculty of Medicine, University of Pavol Jozef Šafárik, Kosice, Slovakia
- 6University Hospital of L. Pasteur, Košice, Slovakia
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BACKGROUND: Narcolepsy is a chronic neurological disorder characterized by excessive daytime sleepiness and, in the case of narcolepsy type 1, cataplexy. Patients may also experience various sleep disturbances, including hallucinations, sleep paralysis, and vivid dreaming. Beyond its clinical symptoms, narcolepsy impacts aspects of daily life, social functioning, emotional well-being, and overall quality of life. Despite the substantial burden associated with the disorder, qualitative research exploring the emotional burden of individuals with narcolepsy is limited. METHODS: A qualitative study was conducted using narrative semi-structured interviews with 25 individuals diagnosed with narcolepsy. The interview framework was validated by a multidisciplinary panel of experts to ensure methodological rigor. Interviews were conducted either in the patients' homes or hospital settings, transcribed verbatim, and then analyzed inductively to develop a comprehensive codebook. A thematic analysis was then performed to identify key patterns and insights into the lived experiences of individuals with narcolepsy. RESULTS: In-depth patient interviews revealed key themes related to the emotional burden of narcolepsy. The onset of symptoms was identified as particularly distressing, evoking feelings of shame, embarrassment, and fear. Symptom manifestation also affected self-perception and important roles in life. Additionally, patients' experiences of daily life, along with their future aspirations and expectations, contributed to a comprehensive understanding of the challenges associated with narcolepsy. CONCLUSION: The impact of narcolepsy is linked with the emotional experiences and self-perception of patients, influencing their quality of life. This burden may also contribute to potential diagnostic delays and hinder the timely initiation of treatment.
Keywords: Narcolepsy, Patients' perspective, qualitative research, Narrative Semi-structured Interviews, Emotional burden
Received: 14 Apr 2025; Accepted: 28 Oct 2025.
Copyright: © 2025 Hlodak, Madarasova Geckova, Dankulincová, Bosakova and Feketeova. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
* Correspondence: Jan Hlodak, jan.hlodak@fses.uniba.sk
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