Date of Award

2014

Document Type

Thesis

Publisher

Edith Cowan University

Degree Name

Bachelor of Science (Psychology) Honours

School

School of Psychology and Social Science

Faculty

Faculty of Health, Engineering and Science

First Supervisor

Professor Alfred Allan

Abstract

Parkinson’s disease (Parkinson’s) is a progressive neurodegenerative disorder. The irreversible and accumulating disability experienced means that people with Parkinson’s progressively lose their autonomy, eventually requiring complete care. Consequently, Parkinson’s significantly impacts sufferers and the people who care for them. Informal care, predominantly provided by female spouses becomes exceptionally demanding over time, and caregivers experience significant morbidity. Stress manifests across all stages of the caregiving trajectory, with diagnosis reported as a particularly stressful period for caregivers; however, few attempts have been made to understand what makes it stressful. The current study explored female spousal caregivers’ subjective experience of the Parkinson’s diagnosis, and asked how the diagnosis could be enhanced to manage caregiver stress. The researcher interviewed nine female spouses of people with Parkinson’s using a semi-structured interview guide, and subjected the transcripts to interpretative phenomenological analysis. Participants’ perceived the diagnosis of Parkinson’s as an extended, temporal and psychologically complex process, of which the clinical diagnosis was only one aspect. Participants reflected that during the process their needs were unmet. The study underscored the importance of understanding the psychosocial impacts of change in the lives of female spousal caregivers during the transition to the caregiving role.

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