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  • 2021WieringaDClinPsy

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The experience of living with a neurodegenerative condition

Research output: ThesisDoctoral Thesis

Publication date24/03/2021
Number of pages233
Awarding Institution
  • Lancaster University
<mark>Original language</mark>English


This thesis pursues 3 lines of research: a meta synthesis of the literature on how individuals adjust to a diagnosis of Parkinson’s disease (PD); an interpretive phenomenological analysis of the experience of 10 individuals living in the pre-manifest stage of Huntington’s disease (HD) and a critical analysis incorporating my reflections on the research.
In the first section, the meta-synthesis is described, which reviewed 20 papers exploring how an individual adjusts to a diagnosis of PD. Three main themes emerged relating to the adjustment process: ‘maintaining coherent sense of self’, ‘feeling in control' and 'holding a positive mindset’. The findings provide insight into how an individual manages the challenges faced by their condition and the importance of maintaining a positive mindset. The review also discussed
clinical implications, including ways to empower individuals with PD to self-manage their condition.
The second section outlines the empirical research, in which 10 individuals living in the pre-manifest stage of HD were interviewed. Three major themes emerged: ‘feeling limited by time’-“trigger for a countdown”, 'the perception of stalling time’-“I have no intention of becoming symptomatic” and 'making the most of time’-“I could be hit by a bus tomorrow”.
In the final section, the critical analysis considers the similarities and differences between the two papers and the strengths and limitations of each piece of research. The researcher motivations are also discussed, and suggestions are made for future research.