Conference Contribution Details
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Lisiecka, D., Kelly, H. & Jackson, J.
IASLT Biennial Conference
Living with Motor Neurone Disease (MND) and Dysphagia - the personal experiences of individuals with MND and their caregivers.
Poster Presentation
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Aims: The overall aim of this pilot study was to gain a deeper understanding of dysphagia in MND. In particular this research aimed to: 1. Examine the impact of dysphagia on the lives of people with MND and their caregivers. 2. Clarify what dysphagia means for these two groups. 3. Investigate the main difficulties experienced by individuals with MND and their caregivers in relation to dysphagia. 4. Identify ways they use to cope with these difficulties. Methods: This was a qualitative multi-perspectival study using Interpretative Phenomenological Analysis. Data was collected by semi-structured interviews supported by observations of a mealtime and mealtime preparation. One person with MND and her caregiver participated. The caregiver was interviewed once and the person with MND twice. Data analysis was consistent with the IPA analytic process (iterative and inductive cycle; Smiths et al. 2009). Results: A number of issues was highlighted in this study. The caregiver described her effort related to diet preparation and ensuring adequate nutrition. She reported difficulties with finding the balance between quality of life versus medical safety. Allowing her mother to eat what she desired not only dis-improved her health, but also meant additional burden for the caregiver. Both participants reported that pureeing food also reduced the taste. It was evident that participants had limited understanding of MND and dysphagia and often did not understand the recommendations made by professionals involved. A lack of engagement in any occupation for the person with MND was evident. Psychosocial impact of MND was frequently mentioned. Conclusion: This pilot study has identified a number of practical information on how people manage dysphagia in MND. This knowledge can potentially result in improved quality of care for people with MND in Ireland. In order to investigate this in more depth recruitment of a larger number of people is planned.