How do people with Motor Neurone Disease experience dysphagia? A qualitative investigation of personal experiences

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dc.check.date2020-06-28
dc.check.infoAccess to this article is restricted until 12 months after publication by request of the publisher.en
dc.contributor.authorLisiecka, Dominika
dc.contributor.authorKelly, Helen
dc.contributor.authorJackson, Jeanne
dc.contributor.funderHealth Research Boarden
dc.date.accessioned2019-07-04T09:07:27Z
dc.date.available2019-07-04T09:07:27Z
dc.date.issued2019-06-28
dc.date.updated2019-07-04T08:57:34Z
dc.description.abstractIntroduction: Motor Neurone Disease is a rapidly progressing, fatal and relatively rare neurodegenerative disease of unknown etiology. People diagnosed with Motor Neurone Disease develop a range of symptoms including dysphagia (swallowing impairments). Although generally recognized to cause serious medical and psycho-social consequences, little is known how this population experiences dysphagia. Aim: To investigate the experiences of dysphagia from the perspective of people diagnosed with Motor Neurone Disease. Method: This study employed Interpretative Phenomenological Analysis to investigate the experiences of dysphagia in ten people with Motor Neurone Disease who participated in individual, multiple interviews (n = 44) and meal-time observations. Results: Participants’ experiences of dysphagia were inseparable from their broader experience of Motor Neurone Disease. Apart from specific circumstances and when dysphagia was severe, dysphagia was not experienced as a constant issue for participants. Participants reported a changed perception of food and fear of choking. They generally aimed to manage dysphagia independently rather than seeking professional help and employed strategies such as choosing easy to swallow foods and limiting mealtime distractions. Conclusion: This study provides a unique contribution in advancing our understanding of dysphagia in Motor Neurone Disease. Professionals need to view dysphagia within the disease as a whole, and recognize personal values, preferences and coping strategies of people with Motor Neurone Disease, in the management of dysphagia.en
dc.description.sponsorshipHealth Research Board (HPF-2015–993)en
dc.description.statusPeer revieweden
dc.description.versionAccepted Versionen
dc.format.mimetypeapplication/pdfen
dc.identifier.citationLisiecka, D., Kelly, H. and Jackson, J. (2019) 'How do people with Motor Neurone Disease experience dysphagia? A qualitative investigation of personal experiences', Disability and Rehabilitation. doi: 10.1080/09638288.2019.1630487en
dc.identifier.doi10.1080/09638288.2019.1630487en
dc.identifier.eissn1464-5165
dc.identifier.issn0963-8288
dc.identifier.journaltitleDisability and Rehabilitationen
dc.identifier.urihttps://hdl.handle.net/10468/8111
dc.language.isoenen
dc.publisherTaylor & Francis Groupen
dc.rights© 2019, Taylor & Francis Group. This is an Accepted Manuscript of an article published by Taylor & Francis in Disability and Rehabilitation on 28 June 2019, available online: https://doi.org/10.1080/09638288.2019.1630487en
dc.subjectMotor Neurone Diseaseen
dc.subjectAmyotrophic Lateral Sclerosisen
dc.subjectDeglutition disordersen
dc.subjectDysphagiaen
dc.subjectQualitative researchen
dc.subjectPerceptionen
dc.subjectIPAen
dc.titleHow do people with Motor Neurone Disease experience dysphagia? A qualitative investigation of personal experiencesen
dc.typeArticle (peer-reviewed)en
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