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"As you can see, we plod along"; narratives of living with motor neurone disease in Wales

Sakellariou, Dikaios ORCID: https://orcid.org/0000-0002-2668-2834 2014. "As you can see, we plod along"; narratives of living with motor neurone disease in Wales. PhD Thesis, Cardiff University.
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Abstract

This dissertation is the outcome of a 25-month long narrative inquiry-based study on experiences of living with motor neurone disease (MND). MND is an adult onset, incurable, neurodegenerative condition that is characterised by loss of voluntary muscle movement as a result of destruction of motor neurones, leading gradually to partial or complete paralysis and eventually to death. The aim of this study was to explore the experiences of people living with MND. Following a narrative inquiry methodology the focus of the study was to explore how specific people live in their local contexts. Data were collected through the use of multiple semi-structured interviews with people with MND and some of their partners. The findings illustrate the unique ways in which people with MND experience the disease and make sense of their life. The seven people who participated in this study were trying to construct a notion of normality in their everyday life, in the midst of what were sometimes perceived as difficult or even abnormal circumstances. Through seeking and trying out different solutions to the challenges they were facing, participants were trying to create a life they could describe as good. The findings highlight the intersubjective nature of illness experiences. For the three couples who participated in the study the experience of being in a long-term relationship was a vital part of who they were, and how they experienced MND. The findings also underline the importance of exploring the experiential knowledge that people living with MND develop through managing the disease and incorporating it in various ways in their daily life. This knowledge can help create a kind of life that people living with MND feel is worth living.

Item Type: Thesis (PhD)
Status: Unpublished
Schools: Healthcare Sciences
Subjects: H Social Sciences > H Social Sciences (General)
H Social Sciences > HQ The family. Marriage. Woman
R Medicine > R Medicine (General)
Date of First Compliant Deposit: 30 March 2016
Last Modified: 20 Oct 2023 12:56
URI: https://orca.cardiff.ac.uk/id/eprint/62506

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