Activities per year
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 is sparse. In New South Wales (NSW), Australia, more than 70 PD support groups are affiliated with the peak body, Parkinson’s NSW. Fifty of these groups are in rural and regional areas. The study aimed 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. The secondary aim was to identify factors impacting the function and sustainability of these support groups.
Methods:
This study used a three-site case study design, each site defined by support group leadership type (person with PD, caregiver, health professional). Purposive recruitment was used to seek expressions of interest from all PD group leaders. Individual semi-structured interviews were conducted virtually with five leaders and 24 group members. Qualitative descriptive analysis of the data was undertaken.
Findings:
People with PD and caregiver leaders described accidentlly falling into the leadership role, as a result of social interactions among the group and 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. PD support group leaders’ displayed altruism in action and were committed to nurturing and guiding the group members on their journey. A ‘community of support’ was created beyond the support group meetings, enabling self-empowerment and opportunities to foster, strengthen and nurture relationships.
Recommendations:
It is recommended that PD peak bodies support and encourage health professional involvement and co-facilitation in support groups and provide training and education for support group leaders to enhance their knowledge and skills of leadership, corporate partnerships, relationship building and partnership maintenance. The development of 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 is highly recommended.
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 is sparse. In New South Wales (NSW), Australia, more than 70 PD support groups are affiliated with the peak body, Parkinson’s NSW. Fifty of these groups are in rural and regional areas. The study aimed 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. The secondary aim was to identify factors impacting the function and sustainability of these support groups.
Methods:
This study used a three-site case study design, each site defined by support group leadership type (person with PD, caregiver, health professional). Purposive recruitment was used to seek expressions of interest from all PD group leaders. Individual semi-structured interviews were conducted virtually with five leaders and 24 group members. Qualitative descriptive analysis of the data was undertaken.
Findings:
People with PD and caregiver leaders described accidentlly falling into the leadership role, as a result of social interactions among the group and 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. PD support group leaders’ displayed altruism in action and were committed to nurturing and guiding the group members on their journey. A ‘community of support’ was created beyond the support group meetings, enabling self-empowerment and opportunities to foster, strengthen and nurture relationships.
Recommendations:
It is recommended that PD peak bodies support and encourage health professional involvement and co-facilitation in support groups and provide training and education for support group leaders to enhance their knowledge and skills of leadership, corporate partnerships, relationship building and partnership maintenance. The development of 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 is highly recommended.
Original language | English |
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Pages | 178-179 |
Number of pages | 2 |
Publication status | Published - 05 Jul 2023 |
Event | 6th World Parkinson Congress 2023 - International Barcelona Convention Center, Barcelona, Spain Duration: 04 Jul 2023 → 07 Jul 2023 https://wpc2023.org/page/AboutCongress https://content.iospress.com/download/journal-of-parkinsons-disease/jpd2399900?id=journal-of-parkinsons-disease%2Fjpd2399900 (Abstracts) |
Conference
Conference | 6th World Parkinson Congress 2023 |
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Country/Territory | Spain |
City | Barcelona |
Period | 04/07/23 → 07/07/23 |
Other | The triennial World Parkinson Congresses provide an international forum for basic scientists, clinical researchers, health care professionals, people with Parkinson’s and others to come together under one roof to discuss, learn, and engage in debate around the latest scientific discoveries, medical and comprehensive care practices related to Parkinson’s disease. Unlike other scientific congresses, the World Parkinson Congress brings together all members of the Parkinson’s community. As an inclusive event, the WPC was founded on the belief that getting world leaders out of their professional silos and forcing a cross pollination of the scientific, clinical, rehabilitation, and advocacy communities would expedite the discovery of a cure and cultivate best treatment practices for this devastating disease. Whether this cross pollination takes place in the audience at a scientific lecture, from the stage between the presenters, during poster talks, or at a small round table discussion, the take away is often the same - we need to evolve how we think when it comes to treatment for Parkinson’s and how to move forward together as a community to expedite research and get us closer to new treatments and ultimately a cure. |
Internet address |
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Activities
- 1 Public lecture/debate/seminar/presentation
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Orange Parkinson's Support Group
Rossiter, R. (Participant)
27 Sept 2023Activity: Participating in or organising an event › Public lecture/debate/seminar/presentation › Community