Feasibility and impact of a physical activity and lifestyle program for Aboriginal families with Machado-Joseph disease in the Top End of Australia
- Jennifer Carr 1, Joyce Lalara 2, Gayangwa Lalara 2, Gwen Lalara 2, Bronwyn Daniels 3, Alan Clough 4,5, Anne Lowell 6, Ruth N Barker 7
- Jennifer Carr 1, Joyce Lalara 2, Gayangwa Lalara 2
- 1College of Healthcare Sciences, James Cook University, Cairns, Qld, Australia.
- 2MJD Foundation, Groote Eylandt, NT, Australia.
- 3MJD Foundation, Ngukurr, NT, Australia.
- 4Community-based Health Promotion and Prevention Studies Group, College of Public Health, Medical and Veterinary Sciences, James Cook University, Cairns, Qld, Australia.
- 5Australian Institute of Tropical Health and Medicine, James Cook University, Cairns, Qld, Australia.
- 6Northern Institute, Charles Darwin University, Darwin, NT, Australia.
- 7The Cairns Institute, James Cook University, Cairns, Queensland, Australia.
- 0College of Healthcare Sciences, James Cook University, Cairns, Qld, Australia.
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View abstract on PubMed
Summary
This summary is machine-generated.The Staying Strong Toolbox program is a feasible and effective physical activity intervention for individuals with Machado-Joseph disease (MJD), improving mobility and reducing ataxia. This lifestyle program supports participants
Area Of Science
- Neuroscience
- Rehabilitation Science
- Public Health
Background
- Hereditary ataxias and neurodegenerative diseases, such as Machado-Joseph disease (MJD), have limited physical activity and lifestyle programs available.
- Aboriginal families in Australia's Top End, with a history of MJD, co-designed a tailored program to address this gap.
Purpose Of The Study
- To explore the feasibility of the co-designed Staying Strong Toolbox program for individuals with MJD.
- To assess the program's impact on mobility, walking, and overall well-being in participants with MJD.
Main Methods
- A mixed-methods, multiple case study design piloted the Staying Strong Toolbox over 4 weeks with eight MJD participants.
- Feasibility was assessed via participation, adherence, adverse events, acceptability, and cost.
- Impact was measured using mobility, ataxia, steps, quality of life, and well-being assessments pre- and post-program.
Main Results
- All participants completed the program, averaging five sessions weekly, focusing on walking, strengthening, and balance.
- Significant improvements were observed in mobility, daily steps, and ataxia severity (p<0.05).
- Quality of life and well-being were maintained throughout the program.
Conclusions
- The Staying Strong Toolbox program is feasible for families affected by MJD, demonstrating positive impacts on physical function.
- Participants reported feeling stronger physically and emotionally, recommending the program for wider implementation.
- The program's adaptable nature suggests potential for international use by other MJD families.
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