Examining leadership of Parkinson’s disease support groups in rural and regional New South Wales: A qualitative study
Abstract
Purpose and setting
The purpose of the study is to investigate leadership in Parkinson’s support groups across rural and regional New South Wales, Australia, specifically focusing on the skills, knowledge, and experience of the leaders. A secondary aim is to identify factors that impact the function and sustainability of these support groups.
Design and participants
The study utilised a qualitative, three-site case study design. Each site was characterised by a different leadership, including a person with PD, a caregiver, and a health professional. Data were collected from semi-structured interviews, and the analysis used the Smith and Firth framework.
Results
Two key themes emerged: ‘altruism in action’ and ‘the value of health professional involvement’. Each leader showed a commitment to help others based on their lived experience of PD and described a sense of personal reward from their role. Issues and challenges included maintaining an active and worthwhile support group; succession planning, and the confronting aspect for new members of seeing people with advanced stages of PD.
Conclusion
Support group leaders demonstrated authentic leadership through their sense of altruism. Health professional involvement enriches the information available to support group members, and the sustainability of the group is enhanced through involvement with peak bodies.
© 2026 V Carroll, MD Bramble, R Rossiter, published by Australasian Neuroscience Nurses Association
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