Abstract
Background and Aim:
Research specifically examining leadership of disease-specific support groups such as cancer and dementia is widely available. However, research focusing on Parkinson’s disease (PD) support groups and leadership of these groups is sparse. PD is a complex and disabling neurodegenerative disease. In New South Wales (NSW), Australia, more than 70 PD 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 PD 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.
Methods:
This study used a three-site case study design, with each site defined by support group leadership type (person with PD, caregiver and health professional). Purposive recruitment was used to seek expressions of interest from all PD group leaders across rural and regional NSW. Individual semi-structured interviews were conducted via Zoom with five leaders and 24 group members. Qualitative descriptive analysis of the data was undertaken.
Findings:
People with PD 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 with PD and the caregivers’ experience was incorporated in their own professional experience. This study demonstrated PD support group leaders’ displayed altruism in action and were committed to nurturing and guiding the group members on their PD 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:
PD 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.
Research specifically examining leadership of disease-specific support groups such as cancer and dementia is widely available. However, research focusing on Parkinson’s disease (PD) support groups and leadership of these groups is sparse. PD is a complex and disabling neurodegenerative disease. In New South Wales (NSW), Australia, more than 70 PD 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 PD 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.
Methods:
This study used a three-site case study design, with each site defined by support group leadership type (person with PD, caregiver and health professional). Purposive recruitment was used to seek expressions of interest from all PD group leaders across rural and regional NSW. Individual semi-structured interviews were conducted via Zoom with five leaders and 24 group members. Qualitative descriptive analysis of the data was undertaken.
Findings:
People with PD 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 with PD and the caregivers’ experience was incorporated in their own professional experience. This study demonstrated PD support group leaders’ displayed altruism in action and were committed to nurturing and guiding the group members on their PD 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:
PD 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.
| Original language | English |
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| Qualification | Master of Philosophy |
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| Supervisors/Advisors |
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| Award date | 17 Apr 2023 |
| Place of Publication | Australia |
| Publisher | |
| Publication status | Published - 25 Feb 2023 |