Living with motor neurone disease (MND) and dysphagia – the personal experiences of people with MND and their caregivers

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dc.contributor.advisor Kelly, Helen en
dc.contributor.advisor Jackson, Jeanne en Lisiecka, Dominika 2018-02-16T12:55:59Z 2018 2018
dc.identifier.citation Lisiecka, D. 2018. Living with motor neurone disease (MND) and dysphagia – the personal experiences of people with MND and their caregivers. PhD Thesis, University College Cork. en
dc.identifier.endpage 322 & 114 en
dc.description.abstract Introduction MND is a rare progressive neurodegenerative illness for which there is no cure. There are approximately 350 people diagnosed with MND in Ireland at any one time. Dysphagia frequently occurs in neurodegenerative diseases such as MND. Dysphagia is generally reported to interfere with the quality of life of PwMND; however, little is known about how people living with MND understand and experience dysphagia. Aims To explore the experiences of dysphagia in MND from the perspectives of PwMND and their caregivers in order to investigate: (1) how they understand dysphagia, (2) how dysphagia impacts their lives, (3) their coping strategies in relation to dysphagia, and (4) their experiences of professional services received to manage dysphagia. Methods In - depth interviews (n=58) were conducted with 10 PwMND and 10 caregivers from Ireland. Data was analysed utilising Interpretative Phenomenological Analysis whereby an idiographic approach was followed by a cross - case analysis of each group. Results It emerged that both groups approached dysphagia in a different manner. PwMND aimed to manage dysphagia on their own; however, the caregivers wished for increased professional support in specific areas, such as the management of choking. A changed perception of food and diminished eating - related pleasure was observed in both groups. Also, a difference was noted between participants' perception of their dysphagia and their clinical presentation. Participants expressed their views in relation to professional services received for dysphagia. Conclusion This study suggests that the experience of dysphagia in MND is complex and should not be investigated / managed in isolation. PwMND and their caregivers understand dysphagia differently and may have different expectations regarding dysphagia management. en
dc.description.sponsorship Health Research Board (HPF-2015-993) en
dc.format.mimetype application/pdf en
dc.language.iso en en
dc.publisher University College Cork en
dc.rights © 2018, Dominika Lisiecka. en
dc.rights.uri en
dc.subject Caregivers en
dc.subject Motor neurone disease en
dc.subject Amyotrophic lateral sclerosis en
dc.subject Dysphagia en
dc.subject Qualitative research en
dc.subject Interpretative phenomenological analysis en
dc.title Living with motor neurone disease (MND) and dysphagia – the personal experiences of people with MND and their caregivers en
dc.title.alternative Living with amyotrophic lateral sclerosis (ALS) and dysphagia – the personal experiences of people with MND and their caregivers en
dc.type Doctoral thesis en
dc.type.qualificationlevel Doctoral en
dc.type.qualificationname PhD (Medicine and Health) en
dc.internal.availability Full text not available en Restricted to everyone for five years en 2023-02-15T12:55:59Z
dc.description.version Accepted Version
dc.contributor.funder Health Research Board en
dc.description.status Not peer reviewed en Speech And Hearing Sciences en
dc.check.reason This thesis is due for publication or the author is actively seeking to publish this material en
dc.check.opt-out Not applicable en
dc.thesis.opt-out false
dc.check.entireThesis Entire Thesis Restricted
dc.check.embargoformat Both hard copy thesis and e-thesis en
dc.internal.conferring Spring 2018 en

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© 2018, Dominika Lisiecka. Except where otherwise noted, this item's license is described as © 2018, Dominika Lisiecka.
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