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Exploring reasons for declining and withdrawing from non-invasive ventilation among motor neurone disease patients: an interpretative phenomenological analysis

Ando, Hikari (2010) Exploring reasons for declining and withdrawing from non-invasive ventilation among motor neurone disease patients: an interpretative phenomenological analysis. Masters thesis, Liverpool Hope University.

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Objectives: The aim of this study was to understand why some individuals with motor neurone disease (MND) withdraw from non-invasive ventilation (NIV), which has been acknowledged to be an effective treatment for this incurable disease. This study was conducted in response to the unexpectedly high rate of declining and withdrawing from NIV treatment discovered by a bigger study which had been conducted at the Walton Centre for Neurology and Neurosurgery (WCNN) and University Hospital Aintree (UHA). Methods: A qualitative approach using a semi-structured interview was conducted with ten individuals (male=8) who declined or withdrew from NIV treatment. The age of the participants was between 64 and 79 (mean age=68). Seven participants had multiple interviews and the interviews used for analysis were chosen for the richness of the data in terms of reasons for their decision making regarding NIV. A phenomenological approach using interpretative phenomenological analysis (IPA) was employed to explore their accounts of their experiences. Findings: Four overarching themes were identified as a result of analysis: preservation of the self, personal perception of intervention with NIV, negative experience with the healthcare services, and not needing NIV. The analysis indicates that changes brought about by the illness could have a negative impact on their perception of themselves, consequently affecting their decision over NIV use. It was also found that NIV may generate fear, which was often observed to form a negative belief about it, leading to a rejection of NIV due to a sense of the loss of control over the machine. A poor impression of the healthcare service was perceived to have impact on participants’ willingness to engage with the hospital in consideration of NIV establishment. The data also shows that individuals’ understanding of their condition influences their perception regarding their need of NIV. Even though these four themes were found to explain different aspects of non-engagement with NIV, further analysis identified the fundamental issue underlying these concepts: perception of self. Conclusions: In this thesis, the self represents the sense of autonomy, dignity and quality of life. It was these aspects of the self which participants were trying to maintain by non-engagement with NIV. Therefore, the findings suggest that it is important to detect the underlying reasons for the NIV use as they are likely to have an impact on their general sense of security of the self. Such an approach is primarily hoped to improve the well-being of patients which in turn may encourage them to use NIV.

Item Type:Thesis (Masters)
Subjects:R Medicine > RC Internal medicine
Departments, Research Centres and Related Units:Academic Faculties, Institutes and Research Centres > Faculty of Science > Department of Psychology
ID Code:2855
Deposited On:23 Aug 2011 10:39
Last Modified:26 Aug 2011 10:20

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