dc.check.date	2023-02-15T12:55:59Z
dc.check.embargoformat	Both hard copy thesis and e-thesis	en
dc.check.entireThesis	Entire Thesis Restricted
dc.check.info	Restricted to everyone for five years	en
dc.check.opt-out	Not applicable	en
dc.check.reason	This thesis is due for publication or the author is actively seeking to publish this material	en
dc.contributor.advisor	Kelly, Helen	en
dc.contributor.advisor	Jackson, Jeanne	en
dc.contributor.author	Lisiecka, Dominika
dc.contributor.funder	Health Research Board	en
dc.date.accessioned	2018-02-16T12:55:59Z
dc.date.issued	2018
dc.date.submitted	2018
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.description.status	Not peer reviewed	en
dc.description.version	Accepted Version
dc.format.mimetype	application/pdf	en
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.identifier.uri	https://hdl.handle.net/10468/5471
dc.language.iso	en	en
dc.publisher	University College Cork	en
dc.rights	© 2018, Dominika Lisiecka.	en
dc.rights.uri	http://creativecommons.org/licenses/by-nc-nd/3.0/	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.thesis.opt-out	false
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
ucc.workflow.supervisor	helen.kelly@ucc.ie

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

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