{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T09:23:34Z","timestamp":1787909014634,"version":"build-2784847793"},"reference-count":42,"publisher":"SAGE Publications","issue":"12","license":[{"start":{"date-parts":[[2024,1,29]],"date-time":"2024-01-29T00:00:00Z","timestamp":1706486400000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100004950","name":"aston university","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100004950","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Health Psychol"],"published-print":{"date-parts":[[2024,10]]},"abstract":"<jats:p>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\u2019s 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; \u2018minimising, dismissing and downplaying symptoms\u2019, \u2018navigating the winding journey to diagnosis\u2019 and \u2018a different way of living\u2019. 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.<\/jats:p>","DOI":"10.1177\/13591053231221373","type":"journal-article","created":{"date-parts":[[2024,1,29]],"date-time":"2024-01-29T07:08:20Z","timestamp":1706512100000},"page":"1336-1349","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":6,"title":["\u2018It\u2019s like tumbleweeds everywhere\u2019: An Interpretative Phenomenological Analysis of the lived experience of being diagnosed with and living with narcolepsy"],"prefix":"10.1177","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2880-0013","authenticated-orcid":false,"given":"Bella","family":"Kilmartin","sequence":"first","affiliation":[{"name":"Aston University, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8580-2373","authenticated-orcid":false,"given":"William","family":"Day","sequence":"additional","affiliation":[{"name":"Aston University, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2024,1,29]]},"reference":[{"key":"bibr1-13591053231221373","doi-asserted-by":"publisher","DOI":"10.1038\/s41582-019-0226-9"},{"key":"bibr2-13591053231221373","doi-asserted-by":"publisher","DOI":"10.1016\/j.healthpol.2012.02.018"},{"issue":"3","key":"bibr3-13591053231221373","first-page":"155","volume":"5","author":"Corbin JM","year":"1991","journal-title":"Scholarly Inquiry for Nursing Practice"},{"key":"bibr4-13591053231221373","doi-asserted-by":"publisher","DOI":"10.1016\/j.sleep.2006.10.010"},{"key":"bibr5-13591053231221373","doi-asserted-by":"publisher","DOI":"10.1126\/science.847460"},{"key":"bibr6-13591053231221373","doi-asserted-by":"publisher","DOI":"10.1016\/j.amjmed.2014.05.037"},{"key":"bibr7-13591053231221373","doi-asserted-by":"publisher","DOI":"10.5664\/jcsm.8286"},{"key":"bibr8-13591053231221373","doi-asserted-by":"publisher","DOI":"10.5664\/jcsm.2926"},{"key":"bibr9-13591053231221373","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-319-23739-8_14"},{"key":"bibr10-13591053231221373","doi-asserted-by":"publisher","DOI":"10.1080\/088704403100081321"},{"key":"bibr11-13591053231221373","volume-title":"\u201cI Already Have a Job Getting Through the Day\u201d: Energy Limiting Chronic Illness (ELCI), Social Inclusion, Employment and Social Security","author":"Hale C","year":"2021"},{"key":"bibr12-13591053231221373","doi-asserted-by":"publisher","DOI":"10.1097\/00012272-199603000-00003"},{"issue":"1","key":"bibr13-13591053231221373","first-page":"16","volume":"7","author":"Hassed C","year":"2012","journal-title":"Malaysian Family Physician"},{"key":"bibr14-13591053231221373","doi-asserted-by":"publisher","DOI":"10.1111\/jsr.12374"},{"key":"bibr15-13591053231221373","doi-asserted-by":"publisher","DOI":"10.1093\/sleep\/25.1.36"},{"key":"bibr16-13591053231221373","unstructured":"LaPointe J (2011) Humanistic basics: Adaptation, accommodation and Artistos. 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