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Available from: <ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"http:\/\/www.abs.gov.au\/AUSSTATS\/abs@.nsf\/Lookup\/4430.0Main+Features802015?OpenDocument\" xlink:type=\"simple\">http:\/\/www.abs.gov.au\/AUSSTATS\/abs@.nsf\/Lookup\/4430.0Main+Features802015?OpenDocument<\/ext-link>."},{"key":"ref12","unstructured":"Garvey D. Review of the social and emotional wellbeing of Indigenous Australian peoples\u2014considerations, challenges and opportunities 2008 [Available from: <ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"http:\/\/www.healthinfonet.ecu.edu.au\/other-health-conditions\/mental-health\/reviews\/our-review\" xlink:type=\"simple\">http:\/\/www.healthinfonet.ecu.edu.au\/other-health-conditions\/mental-health\/reviews\/our-review<\/ext-link>."},{"key":"ref13","unstructured":"Machado Joseph Disease Foundation. About Us: what we do: MJD Foundation; 2017 [cited 2017 16 March]. Available from: <ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"http:\/\/mjd.org.au\/7-about-us.html\" xlink:type=\"simple\">http:\/\/mjd.org.au\/7-about-us.html<\/ext-link>."},{"key":"ref14","first-page":"1","article-title":"Review of physical activity among Indigenous people","volume":"13","author":"C Gray","year":"2013","journal-title":"Australian Indigenous Health"},{"issue":"3","key":"ref15","doi-asserted-by":"crossref","first-page":"200","DOI":"10.3109\/17549507.2012.663791","article-title":"Hiding the story&quot;: indigenous consumer concerns about communication related to chronic disease in one remote region of Australia","volume":"14","author":"A Lowell","year":"2012","journal-title":"Int J Speech Lang Pathol"},{"key":"ref16","article-title":"Constructing grounded theory","author":"K. Charmaz","year":"2014"},{"issue":"3","key":"ref17","doi-asserted-by":"crossref","first-page":"191","DOI":"10.1071\/HE15064","article-title":"Using Indigenist and Indigenous methodologies to connect to deeper understandings of Aboriginal and Torres Strait Islander peoples&apos; quality of life","volume":"26","author":"E Kite","year":"2015","journal-title":"Health promotion journal of Australia: official journal of Australian Association of Health Promotion Professionals"},{"key":"ref18","article-title":"Researching Indigenous Health: a practical guide for researchers","author":"A Laycock","year":"2011"},{"key":"ref19","unstructured":"Anindilyakwa Land Council. Culture 2015 [cited 2016 1 November]. Available from: <ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"http:\/\/anindilyakwa.com.au\/culture\" xlink:type=\"simple\">http:\/\/anindilyakwa.com.au\/culture<\/ext-link>."},{"key":"ref20","unstructured":"Australian Bureau of Statistics. Australian Statistical Geography Standard (ASGS): Volume 1\u2014Main Structure and Greater Capital City Statistical Areas. In: Statistics ABo, editor. Canberra2016."},{"key":"ref21","unstructured":"Machado Joseph Disease Foundation. MJD, Arnhem Land and Beyond <ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"http:\/\/www.mjd.org.au:\" xlink:type=\"simple\">www.mjd.org.au:<\/ext-link> MJD Foundation; 2017 [cited 2017 12 March]. Available from: <ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"http:\/\/mjd.org.au\/2-what-is-mjd.html\" xlink:type=\"simple\">http:\/\/mjd.org.au\/2-what-is-mjd.html<\/ext-link>."},{"key":"ref22","unstructured":"Anindilyakwa Land Council. Annual Report 2015\u20132016 Alyangula, Northern Territory2016 [cited 2017 8 August]. Available from: <ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"https:\/\/www.anindilyakwa.com.au\/uploads\/images\/2015-2016-Annual-Report.pdf\" xlink:type=\"simple\">https:\/\/www.anindilyakwa.com.au\/uploads\/images\/2015-2016-Annual-Report.pdf<\/ext-link>."},{"issue":"2","key":"ref23","doi-asserted-by":"crossref","first-page":"222","DOI":"10.1080\/14490854.2014.11668523","article-title":"Language and Australian Aboriginal History Anindilyakwa and English on Groote Eylandt","volume":"11","author":"L Rademaker","year":"2014","journal-title":"History Australia"},{"key":"ref24","first-page":"111","article-title":"Grounded Theory: A Practical Guide","author":"M Birks","year":"2015"},{"issue":"4","key":"ref25","doi-asserted-by":"crossref","first-page":"568","DOI":"10.1177\/104973201129119217","article-title":"From Meaning to Meaning: The Influence of Translation Techniques on Non-English Focus Group Research","volume":"11","author":"N. Esposito","year":"2001","journal-title":"Qualitative health research"},{"issue":"3","key":"ref26","article-title":"Literature Review and Constructivist Grounded Theory Methodology","volume":"16","author":"R Ramalho","year":"2015","journal-title":"Forum: Qualitative Social Research"},{"issue":"3","key":"ref27","doi-asserted-by":"crossref","first-page":"124","DOI":"10.1207\/s15430421tip3903_2","article-title":"Determining Validity in Qualitative Inquiry","volume":"39","author":"J Creswell","year":"2000","journal-title":"Theory Into Practice"},{"issue":"4","key":"ref28","doi-asserted-by":"crossref","first-page":"700","DOI":"10.1111\/scs.12098","article-title":"Caregiver roles in families affected by Huntington&apos;s disease: a qualitative interview study","volume":"28","author":"M Rothing","year":"2014","journal-title":"Scand J Caring Sci"},{"issue":"8","key":"ref29","doi-asserted-by":"crossref","first-page":"368","DOI":"10.12968\/ijpn.2006.12.8.368","article-title":"Palliative care and support for people with neurodegenerative conditions and their carers","volume":"12","author":"L Kristjanson","year":"2006","journal-title":"Int J Palliat Nurs"},{"issue":"2","key":"ref30","doi-asserted-by":"crossref","first-page":"248","DOI":"10.1007\/s12311-013-0531-6","article-title":"Consensus Paper: Management of Degenerative Cerebellar Disorders","volume":"13","author":"W Ilg","year":"2014","journal-title":"Cerebellum"},{"key":"ref31","doi-asserted-by":"crossref","first-page":"244","DOI":"10.1590\/0004-282X20160038","article-title":"Current concepts in the treatment of hereditary ataxias","volume":"74","author":"P Braga Neto","year":"2016","journal-title":"Arquivos de Neuro-Psiquiatria"},{"issue":"1","key":"ref32","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1111\/j.1365-2524.2005.00530.x","article-title":"Living with motor neurone disease: lives, experiences of services and suggestions for change","volume":"13","author":"R Hughes","year":"2005","journal-title":"Health & Social Care in the Community"},{"issue":"2","key":"ref33","doi-asserted-by":"crossref","first-page":"408","DOI":"10.1111\/j.1365-2648.2010.05459.x","article-title":"Living with advanced Parkinson&apos;s disease: a constant struggle with unpredictability","volume":"67","author":"A Haahr","year":"2011","journal-title":"J Adv Nurs"},{"issue":"1","key":"ref34","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1111\/j.1545-5300.2005.00039.x","article-title":"Toward a biopsychosocial model for 21st-century genetics","volume":"44","author":"J Rolland","year":"2005","journal-title":"Fam Process"},{"key":"ref35","doi-asserted-by":"crossref","first-page":"2050312113505560","DOI":"10.1177\/2050312113505560","article-title":"Trouble with ataxia: A longitudinal qualitative study of the diagnosis and medical management of a group of rare, progressive neurological conditions","volume":"1","author":"G Daker-White","year":"2013","journal-title":"SAGE Open Med"},{"issue":"7523","key":"ref36","doi-asserted-by":"crossref","first-page":"1007","DOI":"10.1136\/bmj.331.7523.1007","article-title":"The patient&apos;s journey: the progressive ataxias","volume":"331","author":"H Box","year":"2005","journal-title":"BMJ"},{"issue":"7","key":"ref37","first-page":"845","article-title":"Bioethics for clinicians: 18. Aboriginal cultures","volume":"163","author":"JH Ellerby","year":"2000","journal-title":"CMAJ"},{"issue":"1","key":"ref38","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1002\/j.2161-1939.2011.tb00103.x","article-title":"Self-determination theory: the importance of autonomy to well-being across cultures","volume":"50","author":"SS Wichmann","year":"2011","journal-title":"Journal of Humanistic Counseling"},{"issue":"9683","key":"ref39","doi-asserted-by":"crossref","first-page":"76","DOI":"10.1016\/S0140-6736(09)60827-8","article-title":"Indigenous health part 2: the underlying causes of the health gap","volume":"374","author":"M King","year":"2009","journal-title":"Lancet"},{"key":"ref40","article-title":"To your door: factors that influence Aboriginal and Torres Strait Islander peoples seeking care","author":"D Askew","year":"2014"},{"issue":"3","key":"ref41","doi-asserted-by":"crossref","first-page":"195","DOI":"10.1071\/HE15048","article-title":"&apos;We don&apos;t tell people what to do&apos;: ethical practice and Indigenous health promotion","volume":"26","author":"K McPhail-Bell","year":"2015","journal-title":"Health promotion journal of Australia: official journal of Australian Association of Health Promotion Professionals"},{"issue":"1","key":"ref42","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1071\/HE11027","article-title":"Culturally appropriate methods for enhancing the participation of Aboriginal Australians in health-promoting programs","volume":"22","author":"L Barnett","year":"2011","journal-title":"Health promotion journal of Australia: official journal of Australian Association of Health Promotion Professionals"},{"issue":"1","key":"ref43","doi-asserted-by":"crossref","first-page":"659","DOI":"10.1186\/s12913-017-2584-6","article-title":"Towards the development of a wellbeing model for Aboriginal and Torres Strait Islander peoples living with chronic disease","volume":"17","author":"C Davy","year":"2017","journal-title":"BMC Health Services Research"},{"key":"ref44","article-title":"National Aboriginal and Torres Strait Islander Health Plan 2013\u20132023","year":"2013"},{"issue":"8","key":"ref45","doi-asserted-by":"crossref","first-page":"894","DOI":"10.1080\/09638288.2016.1277400","article-title":"The meanings of physiotherapy and exercise for people living with progressive cerebellar ataxia: an interpretative phenomenological analysis","volume":"40","author":"E Cassidy","year":"2018","journal-title":"Disabil Rehabil"},{"issue":"4","key":"ref46","doi-asserted-by":"crossref","first-page":"335","DOI":"10.1016\/j.physio.2013.02.001","article-title":"&quot;Six sessions is a drop in the ocean&quot;: an exploratory study of neurological physiotherapy in idiopathic and inherited ataxias","volume":"99","author":"G Daker-White","year":"2013","journal-title":"Physiotherapy"},{"issue":"17","key":"ref47","doi-asserted-by":"crossref","first-page":"1087","DOI":"10.1080\/09638280500493860","article-title":"Use of the ICF in identifying factors that impact participation in physical activity\/rehabilitation among people with disabilities","volume":"28","author":"J. Rimmer","year":"2006","journal-title":"Disability and Rehabilitation"},{"issue":"7","key":"ref48","doi-asserted-by":"crossref","first-page":"609","DOI":"10.1177\/1545968317712469","article-title":"Rehabilitation for Individuals With Genetic Degenerative Ataxia: A Systematic Review","volume":"31","author":"S Milne","year":"2017","journal-title":"Neurorehabil Neural Repair"},{"issue":"11","key":"ref49","first-page":"931","article-title":"Neurorehabilitation for spinocerebellar degeneration","volume":"53","author":"I. Miyai","year":"2013","journal-title":"Clin Neurol"},{"key":"ref50","article-title":"The Strengths Perspective in Social Work Practice","author":"D Saleebey","year":"2009"},{"key":"ref51","first-page":"7","article-title":"Understanding disability: A strengths-based approach","author":"W. 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