A qualitative exploration of individual and couple’s experiences of movement disorders

Glover, Louise and Eccles, Fiona and Dixon, Clare (2023) A qualitative exploration of individual and couple’s experiences of movement disorders. PhD thesis, Lancaster University.

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Abstract

The thesis titled ‘A qualitative exploration of individual and couple’s experiences of movement disorders’ explores experiences relevant to two common movement disorders; Parkinson's and cervical dystonia (CD). Section one presents a meta-ethnography, synthesising 19 qualitative studies relevant to the couple’s experience of Parkinson’s. The analysis of which produced three themes, which were: 1) Disruption of the couple’s roles and responsibilities and attempting to maintain the relationship; 2) Challenges to communication and closeness which can lead to increased resilience; and 3) Increased cognitive and behavioural symptoms leading to grief, burden and isolation. The findings highlight the challenges that couples experience and the individual and relational resources that support them to cope. The relevant strengths, weaknesses, and implications for clinical practice and future research are discussed. Section two presents a qualitative interpretative phenomenological analysis (IPA) study exploring the experience of diagnosis in CD. Six participants were interviewed, and their data analysed. The analysis produced three themes: 1) Losing control over one’s body and attempts to regain control: ‘You don't know what's going on and your whole life is kinda falling apart’; 2)Feeling powerless in response to the health system: ‘I had this change and I couldn't do anything about it, and nobody seemed to have any kind of solution’; 3) Mixed feelings upon diagnosis: ‘It's kinda like a relief, but scary at the same time’. The findings provide further insight and interpretation of the experience of diagnosis and highlight how this can be a significant and distressing experience. Clinical implications and suggestions for further study are discussed. Section three presents a critical appraisal where the author has discussed broader research issues and reflections on the reports contained in sections one and two. Considered, are the implications for the findings presented, their strengths, limitations, and suggestions for future research.