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
Carr, Jennifer J., Lalara, Joyce, Lalara, Gayangwa, Lalara, Gwen, Daniels, Bronwyn, Clough, Alan R., Lowell, Anne, and Barker, Ruth N. (2021) 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. PLoS ONE, 16 (2). e0244311.
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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.
| Item ID: | 71496 |
|---|---|
| Item Type: | Article (Research - C1) |
| ISSN: | 1932-6203 |
| Copyright Information: | © 2021 Carr et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. |
| Date Deposited: | 02 Feb 2022 21:16 |
| FoR Codes: | 42 HEALTH SCIENCES > 4201 Allied health and rehabilitation science > 420109 Rehabilitation @ 50% 45 INDIGENOUS STUDIES > 4504 Aboriginal and Torres Strait Islander health and wellbeing > 450401 Aboriginal and Torres Strait Islander and disability @ 50% |
| SEO Codes: | 20 HEALTH > 2003 Provision of health and support services > 200301 Allied health therapies (excl. mental health services) @ 50% 21 INDIGENOUS > 2101 Aboriginal and Torres Strait Islander community services > 210101 Aboriginal and Torres Strait Islander community service programs @ 50% |
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