ArticlePloS one2021
Staying Strong Toolbox: Co-design of a physical activity and lifestyle program for Aboriginal families with Machado-Joseph disease in the Top End of Australia.
Article in PloS one, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis that pooled it.
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Who cites it
12 citing papers in PubMed, 1 synthesis or guideline pooled it, 19 citations in OpenAlex.
- Exploring co-design: a systematic review of concepts, processes, models, and frameworks used in public health research.Journal of public health (Oxford, England) · 2025Pooled it
- Co-design in healthcare with and for First Nations Peoples of the land now known as Australia: a narrative review.International journal for equity in health · 2025Review
- Dietary and lifestyle interventions for the management of hereditary ataxias.Frontiers in nutrition · 2025Review
- A Culturally Humble Approach to Designing a Sports-Based Youth Development Program With African-Australian Community.Qualitative health research · 2024Article
- Aboriginal families living with MJD in remote Australia: questions of access and equity.International journal for equity in health · 2024Article
- Supporting healthy lifestyles for First Nations women and communities through co-design: lessons and early findings from remote Northern Australia.Frontiers in clinical diabetes and healthcare · 2024Article
- Article
- Addressing Health Disparities through Community Participation: A Scoping Review of Co-Creation in Public Health.Healthcare (Basel, Switzerland) · 2023Article
- Co-creation of a student-implemented allied health service in a First Nations remote community of East Arnhem Land, Australia.The Australian journal of rural health · 2022Article
- Ironbark: Developing a healthy community program for older Aboriginal people.Health promotion journal of Australia : official journal of Australian Association of Health Promotion Professionals · 2022Article
- Sleep disorders among Aboriginal Australians with Machado-Joseph Disease: Quantitative results from a multiple methods study to assess the experience of people living with the disease and their caregivers.Neurobiology of sleep and circadian rhythms · 2022Article
- The Barriers and Facilitators of Sport and Physical Activity Participation for Aboriginal Children in Rural New South Wales, Australia: A Photovoice Project.International journal of environmental research and public health · 2022Article
Corrections and comments
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Authors and funding
8 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Physical activity has positive health implications for individuals living with neurodegenerative diseases. The success of physical activity programs, particularly in culturally and linguistically diverse populations, is typically dependent on their alignment with the culture, lifestyle and environmental context of those involved. Aboriginal families living in remote communities in the Top End of Australia invited researchers to collaborate with them to co-design a physical activity and lifestyle program to keep individuals with Machado-Joseph disease (MJD) walking and moving around. The knowledge of Aboriginal families living with MJD, combined with findings from worldwide MJD research, formed the foundation for the co-design. An experience-based co-design (EBCD) approach, drawing from Indigenous and Participatory methodologies, was used. An expert panel of individuals with lived experience of MJD participated in a series of co-design phases. Prearranged and spontaneous co-design meetings were led by local community researchers within each phase. Data was collected using a culturally responsive ethnographic approach and analysed thematically. Sixteen panel members worked to develop the 'Staying Strong Toolbox' to cater for individuals with MJD who are 'walking strong'; or 'wobbly'; or 'in a wheelchair'. Based on the 'Staying Strong Framework', the Toolbox was developed as a spiral bound A3 book designed to guide the user to select from a range of activities to keep them walking and moving around and to identify those activities most important to them to work on. The 'Staying Strong Toolbox' is a community driven, evidence based resource for a physical activity and lifestyle program for Aboriginal families with MJD. The Toolbox provides a guide for health professionals and support workers to deliver person-centred support to Aboriginal families with MJD, and that can be modified for use by other families with MJD or people with other forms of ataxia around the world.
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