“It’s like tumbleweeds everywhere”: An Interpretative Phenomenological Analysis of the lived experience of being diagnosed with and living with narcolepsy


There is a lack of awareness of how sleep health and sleep disorders are experienced. Previous research has found that living with narcolepsy has a debilitating impact on several areas of an individual’s life alongside significant diagnostic delays. This study uses a phenomenological, qualitative methodology to explore experiences of being diagnosed with and living with narcolepsy. Six women with type 1 narcolepsy participated in semi-structured interviews. Transcripts were analysed using Interpretative Phenomenological Analysis. Capturing the whole illness experience of narcolepsy, our analysis illuminated three superordinate themes; ‘minimising, dismissing and downplaying symptoms’, ‘navigating the winding journey to diagnosis’ and ‘a different way of living’. Through our analysis, we are able to demonstrate the affective impact lack of awareness of sleep and sleep disorders has; resulting in significant diagnostic delays and a lack of support post-diagnosis. Findings demonstrate a need for greater awareness and increased support.

Publication DOI: https://doi.org/10.1177/13591053231221373
Divisions: College of Health & Life Sciences > School of Psychology
College of Health & Life Sciences
Additional Information: Copyright © The Author(s) 2024. This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
Uncontrolled Keywords: Interpretative Phenomenological Analysis (IPA),chronic illness,diagnosis,experience,narcolepsy,qualitative methods,Applied Psychology
Publication ISSN: 1461-7277
Last Modified: 15 Apr 2024 07:44
Date Deposited: 29 Jan 2024 16:52
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Related URLs: https://journal ... 591053231221373 (Publisher URL)
http://www.scop ... tnerID=8YFLogxK (Scopus URL)
PURE Output Type: Article
Published Date: 2024-01-29
Published Online Date: 2024-01-29
Accepted Date: 2023-11-16
Authors: Kilmartin, Bella
Day, William (ORCID Profile 0000-0002-8580-2373)



Version: Published Version

License: Creative Commons Attribution

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