Ms Jennifer Carr1, Ms Joyce Lalara2, Ms Gayangwa Lalara2, Ms Libby Massey2, Mr Nick Kenny2, Mrs Kate Pope2, Professor Alan Clough3, Associate Professor Anne Lowell4, Associate Professor Ruth Barker1
1College of Healthcare Sciences, James Cook University, Cairns, Australia, 2Machado Joseph Disease Foundation, Alyangula, Australia, 3Community-based Health Promotion and Prevention Studies Group, College of Public Health, Medical and Veterinary Sciences and Australian Institute of Tropical Health and Medicine, James Cook University, Cairns, Australia, 4Northern Institute, Charles Darwin University, Darwin, Australia
Background: Machado Joseph Disease (MJD) is a hereditary neurodegenerative disease that causes progressive ataxia and loss of mobility. Among Aboriginal families of Groote Eylandt and related communities across the Top End, MJD has the highest prevalence in the world. To work out the best way to keep families stronger for longer according to their priorities, the first step was to listen and learn from them about (1) what is important and (2) what works best to keep them walking and moving around.
Methods:Semi-structured interviews were conducted with individuals with MJD (n=8) and their family members (n=4) from the Groote Eylandt Archipelago using a collaborative approach, flexible to the needs/priorities of Anindilyakwa participants. Interviews were led by Anindilyakwa community research partners in each participants’ preferred language.
Results: Walking and moving around are considered important, allowing families to do what matters most to them in life. ‘Staying strong inside and outside’ (mentally, emotionally, spiritually, physically) works best to keep walking and moving around as long as possible. ‘Exercising your body’, ‘having something important to do’, ‘keeping yourself happy’, ‘searching for good medicine’, ‘families helping each other’ and ‘going on country’ contribute to staying strong ‘inside and outside’.
Conclusions:Services supporting families with MJD need the flexibility to focus on what is important for each individual and to concurrently support their psychological and physical needs along the disease continuum. With Australia’s National Disability Insurance scheme rollout, it is timely to highlight the significance of individualised care plans developed collaboratively with families.
Jen Carr is a PhD candidate and Physiotherapist working alongside families with MJD and the MJD Foundation to help find the best ways to keep families with MJD walking and moving around. Jen grew up in North Queensland and has spent most of her physio career working in Neurological Rehabilitation across inpatient, outpatient, community and rural and remote settings across Queensland.
Joyce Lalara is an Anindilyakwa woman of Groote Eylandt and community researcher who has worked for the MJD Foundation (MJDF) since 2011. Joyce has extensive experience in cross cultural communication, supporting families with MJD to understand research and medical concepts and guiding MJDF staff and researchers working with families with MJD. Joyce has supported MJD therapy programs and education programs through her work with the MJDF.