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This project will develop a meaningful, feasible, evidence-informed physical activity program for individuals and families with Machado Joseph Disease (MJD). The program will be derived from the needs and priorities of Aboriginal people of the Groote Eylandt Archipelago, Northern Territory. The knowledge and experiences of families with MJD will be combined with knowledge from the Western scientific domain to enable families with MJD in the Top End to stay ‘stronger for longer’.
The Anindilyakwa people of the Groote Eylandt Archipelago (Warnumamalya) have driven this project in order to reduce the devastating impact of MJD on their families and community. Although found in almost every continent of the world, the prevalence of this neurodegenerative disease is estimated to be 100 times greater in affected Aboriginal communities of the Top End than anywhere else in the world. To date, no research has been conducted on the impact of physical activity on ‘walking and moving around’ for individuals with MJD, especially in the cultural and geographical context of Aboriginal communities in the Top End. Researchers from James Cook University were invited by Warnumamalya and the MJD Foundation to work together to undertake this research.
Using a pragmatic approach, grounded in Indigenous and Participatory methodologies, the physical activity program will be developed and tested by the experts – families living with MJD in the Top End. Local Community Research Partners (CRPs) and families with MJD will guide and inform each stage of the research. A modified Delphi consensus approach will be used to develop and strengthen the program. The views and knowledge of families with MJD will be at the forefront, combined with knowledge from the western scientific domain to support them. Using a mixed method multiple-case study design, families with MJD will test the program and provide feedback on their experiences through interviews led by CRPs in the preferred language of participants. Outcome measures for ‘walking and moving around’ and quality of life will be used to quantify changes considered ‘important’ by families with MJD.
This research will project the voices of families with MJD to enhance the knowledge of people working with families with MJD. This in turn, will enable those people to optimise the relevance and quality of support provided to families with MJD and help them stay ‘stronger for longer’. Importantly, the project will also build the capacity of CRPs in research and program implementation and promote continued knowledge exchange between families with MJD, CRPs, and non-Indigenous researchers.
Through strong partnerships, this program will be developed according to the needs and experiences of Aboriginal people with MJD, to reduce the impact of MJD on ‘walking and moving around’. The program will be transferrable to other MJD affected Aboriginal communities. The resources developed will inform policy makers and health services to improve care provided for families with MJD in Australia.
James Cook University
Expected March 2019