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

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.

The Barriers and Facilitators of Sport and Physical Activity Participation for Aboriginal Children in Rural New South Wales, Australia: A Photovoice Project

“…We call for local councils, communities, and schools to consider campaigns to promote alternatives to team sports, such as bike ridingand walking, to support children’s understanding that participating in such activities is also beneficial for their health. Such campaigns must be led by and co-designed with Aboriginal communities [ 27 , 37 ].…”

“…Adopting the principles of co-design [ 27 , 36 ] when developing physical activity programs for Aboriginal children and ensuring that these programs are led and delivered by local Aboriginal community members [ 43 ] is recognized as imperative to improving the accessibility and cultural relevance of such strategies [ 23 , 33 ]. However, these approaches are still yet to be widely implemented:…”

“…Children were invited to yarn about each of the photos they had taken, and these were uploaded to a secure location on the researcher’s computer. Prompts were co-designed with the APOs from the participating communities [ 27 ].…”

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

“…Disease manifestations are compounded by geographic remoteness, lack of access to adequate health care services, and historical disadvantage ( Carr et al, 2019b ). As there is no known cure for MJD, treatment is limited to supportive care and symptom management ( Carr et al, 2021 ). In tandem with generalised muscle weakness and psychological distress, sleep disturbances are debilitating for people with MJD, impairing the ability to engage with therapy or medical appointments and thus compromising quality of life.…”

Co-designing a digital health tool to deliver occupational health and safety strategies for sex workers

“…All participants provided their informed written consent via e-mail con rmation, and they also consented to having the co-design sessions audio recorded. Co-design sessions were scheduled at an agreed-upon time by all participants and the research team made themselves available at those times; accommodating the participants' schedule is a best practice in co-design [71,72]. Participants were compensated CAD$30 per hour for their participation.…”