Journal Article

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

Barker, Ruth N., Carr, Jennifer J., Lowell, Anne, Clough, Alan R., Lalara, Joyce, Lalara, Gwen, Daniels, Bronwyn, Lalara, Gayangwa

2021

Overview

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.

• Publisher: Public Library of Science,Public Library of Science (PLoS)
• Subject: Adult / Ataxia / Australia / Australian aborigines / Biology and Life Sciences / Care and treatment / Cerebellar ataxia / Co-design / Community / Computer and Information Sciences / Culture / Data analysis / Demographic aspects / Disease / Editing / End users / Engineering and Technology / Ethics / Exercise / Female / Health aspects / Health care / Health promotion / Humans / Life Style / Lifestyles / Machado-Joseph disease / Machado-Joseph Disease - therapy / Male / Medical research / Medicine and Health Sciences / Methodology / Middle Aged / Native peoples / Physical activity / Physical fitness / Public health / Research ethics / Reviews / Social Sciences / Walking