Please be aware that this website may contain images, voices or names of deceased persons in the photographs, film, audio recordings or printed material.

Physical activity program for Aboriginal families with Machado Joseph Disease

Developing a physical activity program for Aboriginal families with Machado Joseph Disease (MJD) living in the Top End of Australia

 

Project aim   

This project sought to develop a meaningful, evidence-informed physical activity program derived from the expressed concerns, needs, priorities and ideas of the Aboriginal people with Machado Joseph Disease (MJD) living in the Top End of Australia.  

Project team 

Project leader: Associate Professor Ruth Barker  
Project partner: Machado Joseph Disease Foundation  
Administering organisation: James Cook University   
Project timeline: 01/03/2018—31/03/2019  

Methodology  

  1. The first study explored, from the perspective of families with MJD, 'what is important' and 'what works best' to keep people with MJD walking and moving around  
  2. The second study explored the best available evidence from western scientific literature, to identify ways to keep people with MJD walking and moving around, in line with the 'Staying Strong' Framework.
  1. In-depth interviews were conducted with participants to explore feasibility of the program from the participants' perspective.  
  2. Feasibility of program implementation and evaluation were also explored.   
  3. The program was further modified based on information provided by results of the case studies.   

Project findings  

Project outcomes   

Knowledge  

  • This project generated a culturally appropriate, important and effective resource for people with MJD  
  • The Staying Strong Toolbox enabled Aboriginal families with MJD to stay strong on the outside and on the inside and has the potential to be feasible for long term use in remote Aboriginal communities across the Top End and further after.  

Awareness  

  • This project generated awareness of ‘what works best’ to increase mobility for people with MJD in remote Aboriginal communities. This included 'exercising your body', 'keeping yourself happy', and 'having something important to do', 'going on country', 'using traditional medicine' and 'families helping each other'.  
  • Participants felt that the knowledge gained in this project can be used to help people with MJD nationally and internationally  

Behaviour  

  •  The Staying Strong Toolbox will benefit families with MJD in Australia and internationally, helping them to remain strong on the inside and outside, and in turn, live a good life for longer.  
  • The story of the development and evaluation of the 'Staying Strong' Toolbox may strengthen future collaborative research in Aboriginal and Torres Strait Islander communities.  

Skills  

  • One student was involved in this project, and several community research partners benefitted in the development of their research skills.   
Related resources:
Project leader

Jennifer Carr

Administering institution:

James Cook University

Completion date:

Expected March 2019