Title

"Going at half speed": Parkinson's disease in rural and regional Australia

Abstract

Background: Parkinson’s disease (PD) is more prevalent in regional areas, and individuals with PD in this setting are more likely to have a lower quality of life than their urban counterparts. Despite this, there is limited evidence regarding patient-identified factors contributing to quality of life. The recent introduction of a PD nurse specialist and dance therapy classes in Wagga Wagga provides an ideal, regional setting to investigate patient opinions of these services. This study aims to examine the impact of Parkinson’s disease on the quality of life of individuals living in Wagga Wagga and the Riverina Region, and to assess these patients’ opinions regarding access to health and support services.

Methods: A qualitative approach was undertaken through semi-structured interviews with PD patients and their carers. A modified grounded theory technique was used for analysis. Demographic data, and results from the Parkinson’s Disease Quality of Life Questionnaire (PDQL), were also collected to obtain background information about the sample population.

Results: PD has a significant impact on the quality of life of this diverse, regional population. Isolation, a loss of independence, a change in self-identity and concern for future care requirements were perceived as contributing factors to a lower quality of life. These overarching categories were characterised by the major themes: geographical distance, self-consciousness, a lack of information, early retirement and loss of ability for self-care. Regular access to a neurologist, physiotherapy, a PD nurse specialist, dance therapy classes and a support group were regarded as particularly valuable for improving quality of life. However, access to services was not ideal, with participants reporting delays to initial specialist appointments, minimal input from general practitioners (GPs), and a desire for ongoing physiotherapy.

Conclusion: From the patient and carer perspective, PD is underserviced in this regional location. Within the current health services framework, more specialist access, GP upskilling, ongoing provision of specialist nurse services and dance therapy classes were identified as improvements which could increase quality of life. Further examination of the current service delivery model is required, particularly in the area of GP needs.

Keywords

Parkinson’s disease, regional, rural, Australia, quality of life, health services

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