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Aboriginal Chronic Disease Care Pathways: Final Report

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Aboriginal Chronic Disease Care Pathways: Final Report Aboriginal Chronic Disease Care Pathways: Final Report December 2016 Kathleen Clapham Scott Winch Kate Senior Pam Grootemaat Nadia Neal Virginia Marshall Claire Manning About the Artwork The artwork on the front cover is by artists and sisters Lorraine Brown and Narelle Thomas, east coast Saltwater people. The painting is titled ‘Dealing with our sickness knowledge – change of life.’ The painting is inspired by the following words which relate to the challenges and necessity of dealing with illness. When we know we’re sick. We must deal with it. We must change our ways. It’s hard but we must try. Suggested citation for final report Clapham K, Winch S, Senior K, Grootemaat P, Neal N, Marshall V, Manning C . (2016) Aboriginal Chronic Disease Care Pathways: Final Report. Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong. _____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ Table of Contents List of figures ......................................................................................................................... IV List of tables .......................................................................................................................... IV Terminology.............................................................................................................................V Acknowledgements ............................................................................................................... VI Abbreviations ....................................................................................................................... VII Objectives of the Report ...................................................................................................... VIII Key messages ....................................................................................................................... VIII Executive summary ................................................................................................................. IX 1 Introduction ..................................................................................................................... 1 1.1 Background ....................................................................................................................... 1 1.2 Aims and objectives of the research ................................................................................ 1 1.3 Scope of the report ........................................................................................................... 2 2 Background and literature ................................................................................................ 3 2.1 Key findings from the literature ....................................................................................... 4 2.1.1 Perspectives on chronic disease in the Australian Indigenous population .............. 4 2.1.2 Trends in chronic disease .......................................................................................... 4 2.1.3 Indigenous experience of having and managing a chronic disease .......................... 5 2.2 Policy context ................................................................................................................... 6 2.2.1 The national level ...................................................................................................... 7 2.2.2 The state level ......................................................................................................... 10 2.2.3 The Illawarra Shoalhaven Local Health District ....................................................... 13 2.3 The regional context ....................................................................................................... 13 2.3.1 Hospitalisation due to chronic conditions .............................................................. 14 2.3.2 Potentially preventable hospitalisations ................................................................. 15 2.3.3 Unplanned hospital readmissions within 28 days .................................................. 17 2.3.4 Services available to Aboriginal people with chronic condition ............................. 18 3 Methods and Approach .................................................................................................. 21 3.1 Addressing the aims and objectives of the research ...................................................... 21 3.2 Indigenous research approach ....................................................................................... 21 3.3 Data sources and data collection processes .................................................................. 21 3.4 Selection and recruitment of participants ..................................................................... 22 3.4.1 Aboriginal client interviews ..................................................................................... 22 3.4.2 Focus group participants ......................................................................................... 23 _____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ Aboriginal Chronic Disease Care Pathways: Final Draft Report Page I _____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ 3.4.3 Service providers ..................................................................................................... 23 3.4.4 System stakeholders ............................................................................................... 24 3.4.5 Program managers .................................................................................................. 24 3.5 Program design review ................................................................................................... 24 3.6 Data analysis ................................................................................................................... 24 3.7 Ethical issues and approvals ........................................................................................... 25 3.8 Governance ..................................................................................................................... 26 3.9 Strengths and limitations of the study ........................................................................... 26 4 Experiencing the system: Aboriginal perspectives .......................................................... 27 4.1 Interviews with Aboriginal clients .................................................................................. 27 4.2 Focus group discussions with Aboriginal community members .................................... 28 4.3 Key questions of interest ................................................................................................ 29 4.3.1 Understanding of their health condition ................................................................ 29 4.3.2 Recent hospital experience ..................................................................................... 31 4.3.3 Information and support from hospital staff .......................................................... 36 4.3.4 Managing their chronic disease at home ................................................................ 37 4.3.5 Accessing health care .............................................................................................. 43 4.3.6 Experiencing local health services and having a care plan ..................................... 45 4.3.7 Experiencing Aboriginal Chronic Disease Group Programs .................................... 52 4.3.8 Aboriginal people’s suggestions for improvement ................................................. 58 4.4 Section summary ............................................................................................................ 61 5 Experiencing the system: Service providers and system stakeholder perspectives ......... 63 5.1 Interviews with service providers ................................................................................... 63 5.2 Interviews with system stakeholders ............................................................................. 64 5.3 Key questions of interest ................................................................................................ 64 5.3.1 Providing support ...................................................................................................
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