R Kirkham1, L J Maple-Brown2, N Freeman3, B Beaton4, R Lamilami5, M Hausin6, A-M Puruntatemeri7, P Wood8, S Signal9, S W Majoni10, A Cass11, J T Hughes12. 1. Menzies School of Health Research, Charles Darwin University, Darwin, NT, Australia. Electronic address: renae.kirkham@menzies.edu.au. 2. Menzies School of Health Research, Charles Darwin University, Darwin, NT, Australia; Division of Medicine, Royal Darwin Hospital, Darwin, NT, Australia. Electronic address: louise.maple-brown@menzies.edu.au. 3. Division of Medicine, Royal Darwin Hospital, Darwin, NT, Australia. Electronic address: natasha.freeman@menzies.edu.au. 4. Division of Medicine, Royal Darwin Hospital, Darwin, NT, Australia; Top-End Renal Service, Darwin, NT, Australia. Electronic address: barbara.beaton@nt.gov.au. 5. Top-End Renal Service, Darwin, NT, Australia; Community Developer, Interpreter, Renal Recipient, Darwin, NT, Australia. Electronic address: ilaglamir57@gmail.com. 6. Top-End Renal Service, Darwin, NT, Australia; Bilingual Speaking Renal Dialysis Recipient, Darwin, NT, Australia. Electronic address: meandkidneycare1@menzies.edu.au. 7. Top-End Renal Service, Darwin, NT, Australia; Elder from Pirlangimpi, Tiwi Islands, NT, Australia. Electronic address: meandkidneycare@menzies.edu.au. 8. Division of Medicine, Royal Darwin Hospital, Darwin, NT, Australia; Top-End Renal Service, Darwin, NT, Australia. Electronic address: pamela.wood@nt.gov.au. 9. Top-End Renal Service, Darwin, NT, Australia. Electronic address: Selina.signal@nt.gov.au. 10. Menzies School of Health Research, Charles Darwin University, Darwin, NT, Australia; Division of Medicine, Royal Darwin Hospital, Darwin, NT, Australia; Flinders University and Northern Territory Clinical School, Royal Darwin Hospital Campus, Darwin, NT, Australia. Electronic address: William.majoni@nt.gov.au. 11. Menzies School of Health Research, Charles Darwin University, Darwin, NT, Australia. Electronic address: alan.cass@menzies.edu.au. 12. Menzies School of Health Research, Charles Darwin University, Darwin, NT, Australia; Division of Medicine, Royal Darwin Hospital, Darwin, NT, Australia; Top-End Renal Service, Darwin, NT, Australia. Electronic address: Jaquelyne.hughes@menzies.edu.au.
Abstract
OBJECTIVES: Healthcare policy and planning should be informed by a partnership between healthcare services and healthcare users. This is critical for people who access care frequently such as indigenous Australians who have a high burden of chronic kidney disease. This study aimed to explore the most appropriate ways of enhancing services by incorporating renal patients' expectations and satisfaction of care in Australia's Northern Territory. STUDY DESIGN: This is a participatory action research. METHODS: Six aboriginal health users with end-stage kidney disease were recruited to form an Indigenous Reference Group. This group met bimonthly between April and November 2017 and meetings took the same structure as a focus group. Findings from these meetings were presented to health policy and planners in a feedback loop implemented by the study. RESULTS: This framework enabled indigenous knowledge to guide the project, indigenous priorities to be identified in this context and timely feedback of information to inform the strengths and priorities of the health service. Changes were recognised and addressed immediately. CONCLUSIONS: This qualitative research framework is a useful mechanism for providing local data to inform patient-centred health system change as expressed by health users. We recommend this consumer partnership framework be embedded into existing operational structures to support the ongoing sustainability of this group. Crown
OBJECTIVES: Healthcare policy and planning should be informed by a partnership between healthcare services and healthcare users. This is critical for people who access care frequently such as indigenous Australians who have a high burden of chronic kidney disease. This study aimed to explore the most appropriate ways of enhancing services by incorporating renal patients' expectations and satisfaction of care in Australia's Northern Territory. STUDY DESIGN: This is a participatory action research. METHODS: Six aboriginal health users with end-stage kidney disease were recruited to form an Indigenous Reference Group. This group met bimonthly between April and November 2017 and meetings took the same structure as a focus group. Findings from these meetings were presented to health policy and planners in a feedback loop implemented by the study. RESULTS: This framework enabled indigenous knowledge to guide the project, indigenous priorities to be identified in this context and timely feedback of information to inform the strengths and priorities of the health service. Changes were recognised and addressed immediately. CONCLUSIONS: This qualitative research framework is a useful mechanism for providing local data to inform patient-centred health system change as expressed by health users. We recommend this consumer partnership framework be embedded into existing operational structures to support the ongoing sustainability of this group. Crown
Authors: Athira Rohit; Leisa McCarthy; Shiree Mack; Bronwyn Silver; Sabella Turner; Louise A Baur; Karla Canuto; John Boffa; Dana Dabelea; Katherine A Sauder; Louise Maple-Brown; Renae Kirkham Journal: Int J Environ Res Public Health Date: 2021-08-31 Impact factor: 3.390