Lived experiences of psychological distress in neck dystonia

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dc.contributor.authorMcCormack, Dervalen
dc.contributor.authorO'Keeffe, Fiadhnaiten
dc.contributor.authorEccles, Fionaen
dc.date.accessioned2025-09-18T11:37:46Z
dc.date.available2025-09-18T11:37:46Z
dc.date.issued2025-07-29en
dc.description.abstractPurpose: Neck dystonia (ND) is a hyperkinetic movement disorder affecting the head and neck regions. High prevalence rates of psychological distress have been reported in ND. The aim of this research was to explore people’s experiences of distress, in order to understand the needs of this population further. Materials and Methods: Interpretative phenomenological analysis (IPA) was used to analyse data obtained from 11 semi-structured interviews with people with ND, recruited through a UK based charity. Results: Four group experiential themes were constructed from the data: 1) Uncertainty in the lead up to diagnosis “I was so full of fear” 2) Isolating nature of the condition “you don't know who to turn to” 3) Mind and body relationship “is my head turning because I’m thinking about it?” and 4) A challenging new way of life “living life sideways”. Conclusions: Uncertainty, abandonment, loss, stigma and isolation were central to experiences of distress. Most participants believed that psychological difficulties were a consequence of living with ND, while some wondered if their distress preceded the onset of their condition. The study highlighted the need for greater psychological input.en
dc.description.statusPeer revieweden
dc.description.versionPublished Versionen
dc.format.mimetypeapplication/pdfen
dc.identifier.citationMcCormack, D., O'Keeffe, F. and Eccles, F. (2025) 'Lived experiences of psychological distress in neck dystonia', Disability and Rehabilitation. https://doi.org/10.1080/09638288.2025.2536719en
dc.identifier.doi10.1080/09638288.2025.2536719en
dc.identifier.eissn1464-5165en
dc.identifier.issn0963-8288en
dc.identifier.journaltitleDisability and Rehabilitationen
dc.identifier.urihttps://hdl.handle.net/10468/17880
dc.language.isoenen
dc.publisherTaylor & Francisen
dc.rights© 2025, the Authors. Published by informa UK limited, trading as Taylor & Francis Group. This is an open access article distributed under the terms of the Creative Commons attribution-nonCommercial-noDerivatives license (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, andis not altered, transformed, or built upon in any way. the terms on which this article has been published allow the posting of the accepted Manuscript in arepository by the author(s) or with their consent.en
dc.rights.urihttps://creativecommons.org/licenses/by-nc-nd/4.0/en
dc.subjectCervical dystoniaen
dc.subjectSpasmodic torticollisen
dc.subjectWellbeingen
dc.subjectMooden
dc.subjectDistressen
dc.subject~Applied Psychology - Journal Articles~en
dc.titleLived experiences of psychological distress in neck dystoniaen
dc.typeArticle (peer-reviewed)en
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