Clinical Nurse Consultant Vince Carroll – the Parkinson’s Specialist Nurse co-funded by Parkinson’s NSW in the Mid North Coast Local Health District – has been awarded a Higher Degree by Research University Medal by Charles Sturt University.

The award was in recognition of Vince’s outstanding academic achievement on attaining his Master of Philosophy (Lab Based) degree. His research focus was Examining leadership of Parkinson’s disease support groups in rural and regional New South Wales: A qualitative descriptive case study.

Background and aim of research

Research specifically examining leadership of disease-specific support groups such as cancer and dementia is widely available. However, research focusing on Parkinson’s disease support groups and leadership of these groups is sparse.

In New South Wales more than 70 Parkinson’s Support Groups are affiliated with Parkinson’s NSW, with 50 of these Groups in rural and regional areas. The aim of this study was to investigate and compare models of leadership in Parkinson’s Support Groups across rural and regional NSW – specifically focusing on the skills, knowledge, and attributes of the Group Leaders.

A secondary aim was to identify factors that impacted the function and sustainability of these Support Groups.

Methodology

This study used a three-site case study design, with each site defined by Support Group leadership type (person living with Parkinson’s, caregiver, and health professional).

Purposive recruitment was used to seek expressions of interest from all Parkinson’s Support Group Leaders across rural and regional NSW. Individual semi-structured interviews were conducted via Zoom with five leaders and 24 Group participants. Qualitative descriptive analysis of the data was undertaken.

Findings

People with Parkinson’s and caregiver leaders described accidently falling into the leadership role, with this arising from social interactions among the Group and the members’ collective perception that a particular person was more ‘leader-like’ and better able to lead the group than others.

For the health professional Leader, a deep understanding of people living with Parkinson’s and the caregivers’ experience was incorporated in their own professional experience.

This study demonstrated that Parkinson’s Support Group Leaders displayed ‘altruism in action’ and were committed to nurturing and guiding the group members on their Parkinson’s journey. A ‘community of support’ was created beyond the Support Group meetings, which enabled self-empowerment and provided opportunities to foster, strengthen and nurture relationships.

Recommendations based on research outcomes

Parkinson’s peak bodies should support and encourage health professional involvement and co-facilitation in Support Groups. They should also provide training and education for Support Group leaders to enhance their knowledge and skills of leadership, corporate partnerships, relationship building and partnership maintenance.

Finally, they should develop a communication strategy to acknowledge and enhance the value of Support Group leaders, particularly their level of cooperation and altruistic approach to the leadership role.

Note

Parkinson’s NSW supported this body of research and is currently implementing the research recommendations as part of its strategic direction of building the capacity and sustainability of Support Groups across NSW.

For more on Vince Carroll’s background and his research output, click here.