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An exploration of the physical activity life cycle in Huntington’s disease

Hamana, Katy ORCID: 2017. An exploration of the physical activity life cycle in Huntington’s disease. PhD Thesis, Cardiff University.
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This study aimed to explore how living with Huntington’s disease (HD) impacts on the experience of physical activity (PA) across the stages of the disease. The research questions were: 1) What are the experiences of PA participation across the stages of HD? 2) How do the nuances of living with a neurodegenerative disease such as HD affect engagement in PA? The focus group (FG) method was used to explore the breadth of experiences of PA in the context of HD. Participants of eight FGs across the UK included people across the spectrum of HD with varying degrees of symptom manifestation, caregivers (family members/formal caregivers), and healthcare professionals. Framework analysis method (Ritchie and Spencer 1994) was used for data analyses. The process involved five stages: familiarisation, coding, indexing, charting and mapping, and interpretation of data to develop key themes. A key part of the process was development of an analytical coding framework to use in the indexing (of the data) stage. The data itself and a theoretical model (self-regulation model) were both used to develop the framework. The literature review identified a lack of theoretically underpinned qualitative research in PA and HD, therefore the self-regulation model (SRM) (Levanthal et al. 1984) was selected to explore PA in HD. Components of the SRM were used to develop a priori ‘index codes’ of the framework. Open coding of transcripts was also used to develop ‘index codes’ of the framework. The findings highlighted that over the life-span of the disease the needs and abilities of people with HD change, and this has implications such as coping responses and strategies for how PA is experienced and sustained in HD. Social context and environment are key aspects that require consideration for PA in HD, and this has implications such as consideration of familial or caregiver support and general public awareness of HD for development of management and research interventions. The SRM facilitated understanding of participant experiences, however, it appeared that self-regulation of activities becomes more collaborative with the caregiver as HD progresses. As such, a modified version of the SRM that incorporates the increasingly collaborative regulation of PA has been suggested and is presented for understanding PA in HD.

Item Type: Thesis (PhD)
Date Type: Completion
Status: Unpublished
Schools: Healthcare Sciences
Date of First Compliant Deposit: 15 January 2018
Last Modified: 03 Nov 2022 10:18

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