'Staying strong on the inside and outside' to keep walking and moving around: perspectives from Aboriginal people with Machado Joseph Disease and their families from the Groote Eylandt Archipelago, Australia

Carr, Jennifer J., Lalara, Joyce, Lalara, Gayangwa, O'Hare, Gloria, Massey, Libby, Kenny, Nick, Pope, Kate E., Clough, Alan R., Lowell, Anne, and Barker, Ruth N. (2019) 'Staying strong on the inside and outside' to keep walking and moving around: perspectives from Aboriginal people with Machado Joseph Disease and their families from the Groote Eylandt Archipelago, Australia. PLoS ONE, 14 (3). e0212953.

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Abstract

Machado Joseph Disease (MJD) (spinocerebellar ataxia 3) is a hereditary neurodegenerative disease causing progressive ataxia and loss of mobility. It is the most common spinocerebellar ataxia worldwide. Among Aboriginal families of Groote Eylandt and related communities across Australia's Top End, MJD is estimated to be more prevalent than anywhere else in the world. This study explored lived experiences of individuals and families with MJD to determine what is important and what works best to keep walking and moving around. A collaborative qualitative exploratory study, drawing from constructivist grounded theory methods, was undertaken for data collection and analysis. Semi-structured in-depth interviews were conducted with individuals with MJD (n = 8) and their family members (n = 4) from the Groote Eylandt Archipelago where similar to 1500 Aboriginal people (Warnumamalya) live. Interviews were led by Warnumamalya community research partners in participants' preferred language(s). Participants described their experience of living with MJD, from 'knowing about MJD', 'protecting yourself from MJD' and 'adjusting to life with MJD'. While the specific importance of walking and moving around differed widely between participants, all perceived that walking and moving around enabled them to do what mattered most to them in life. 'Staying strong on the inside and outside' (physically, mentally, emotionally, spiritually) was perceived to work best to keep walking and moving around as long as possible. A framework that included personal and environmental strategies for staying strong emerged: 'Exercising your body', 'having something important to do', 'keeping yourself happy', 'searching for good medicine', 'families helping each other' and 'going country'. This study, the first to explore lived experiences of MJD in Australia, highlights the importance of maintaining mobility as long as possible. Strategies perceived to work best address physical and psychosocial needs in an integrated manner. Services supporting families with MJD need flexibility to provide individualised, responsive and holistic care.

Item ID: 57826
Item Type: Article (Research - C1)
ISSN: 1932-6203
Copyright Information: © 2019 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.
Funders: Lowitja Institute CRC (LICRC)
Projects and Grants: LICRC Grant ID: 017-SF-005
Date Deposited: 03 Apr 2019 07:37
FoR Codes: 11 MEDICAL AND HEALTH SCIENCES > 1109 Neurosciences > 110904 Neurology and Neuromuscular Diseases @ 50%
11 MEDICAL AND HEALTH SCIENCES > 1117 Public Health and Health Services > 111701 Aboriginal and Torres Strait Islander Health @ 50%
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