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Participants needed for study on Parkinson’s support groups in rural and regional NSW

A Charles Sturt University PhD candidate is calling on rural and regional members of Parkinson’s NSW support groups to participate in a new study.

A Charles Sturt University PhD candidate from Coffs Harbour is inviting rural and regional members of Parkinson’s NSW support groups to participate in a new study. The study by Mr Vincent Carroll aims to explore models of Parkinson’s support group leadership to identify what makes and creates an effective Parkinson’s support group from the perspective of people with the disease, their caregivers, and support group leaders. Mr Carroll, who is also a Parkinson’s Clinical Nurse Consultant at the Mid North Coast Local Health District and Parkinson’s NSW, said support groups play an important role in enhancing the coping skills and abilities of people living with the disease and their caregivers. He hopes his study will help to inform the support groups and peak bodies, like Parkinson’s NSW, so they can build even stronger leadership and capacity. “The need for support is a central part of living and dealing with the challenges Parkinson’s disease brings to an individual and the caregivers who live with them,” Mr Carroll said. “Getting together with other people who are facing similar challenges allows everyone to share feelings, resources and experiences. “There is research out there now that shows people have better health outcomes by participating in a support group – they are better informed, better connected socially, and have a better understanding of their chronic illness. “But, we are starved for research in the Parkinson’s disease space in terms of models of support group leadership. “My study aims to explore models of Parkinson’s support group leadership and what makes and creates an effective Parkinson’s support group. “Ultimately, my study will involve listening carefully to my research participants’ stories, experiences, and journeys, so we can understand group leadership and what makes and creates an effective Parkinson’s support group.” The study will focus on four different types of group leadership – including groups led by a community volunteer, a person with Parkinson’s, a caregiver, or a health professional. Mr Carroll said he chose to undertake the study with people living in regional and rural NSW to contribute towards strengthening the services in these areas. “I wanted to work with Parkinson’s NSW for my PhD study as their focus is to provide support and services to people in regional and rural areas,” he said. “Conducting research on how to strengthen support groups was a good fit because they are the heart and soul of Parkinson’s NSW. “My study also aligns with Charles Sturt University's core values of making an impact within its communities, and the University’s research narrative to create a world worth living in through developing resilient people and flourishing communities in rural and regional areas of NSW.” Participants will be asked to take part in a 45-90 minute video interview conducted by Mr Carroll. After the interview, participants will be asked if they would like to review the research findings and will be posted or emailed the initial written summary. A follow-up conversation for participants to discuss the findings with Mr Carroll will then be organised. All responses will be treated confidentially. Further information including an information sheet on the study is available online on Charles Sturt ThinkSpace website and the Parkinson’s NSW website. Questions about the study can be directed to Mr Carroll via email The study is being supervised by Associate Professor Rachel Rossiter and Associate Professor Marguerite Bramble from Charles Sturt.

Above: (left to right): Artist and Parkinson’s NSW support group member, Mr David Carroll, and Charles Sturt PhD candidate, Mr Vince Carroll (no relation). Image taken prior to COVID-19 pandemic.

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