My experiences with kidney care: A qualitative study of adults in the Northern Territory of Australia living with chronic kidney disease, dialysis and transplantation
Autoři:
Jaquelyne T. Hughes aff001; Natasha Freeman aff001; Barbara Beaton aff003; Anne-Marie Puruntatemeri aff004; Monica Hausin aff005; Gerarda Tipiloura aff006; Pamela Wood aff003; Selina Signal aff003; Sandawana W. Majoni aff001; Alan Cass aff001; Louise J. Maple-Brown aff001; Renae Kirkham aff001
Působiště autorů:
Wellbeing and Preventable Chronic Disease Division, Menzies School of Health Research, Charles Darwin University, Darwin, NT, Australia
aff001; Division of Medicine, Royal Darwin Hospital, Darwin, NT, Australia
aff002; Top-End Renal Service, Darwin, NT, Australia
aff003; Elder from Pirlangimpi, Tiwi Islands, NT, Australia
aff004; Bilingual speaking renal dialysis recipient, Darwin, NT, Australia
aff005; Elder from Wurrumiyanga, Tiwi Islands, NT, Australia
aff006; Flinders University and Northern Territory Clinical School, Royal Darwin Hospital Campus, Darwin, NT, Australia
aff007
Vyšlo v časopise:
PLoS ONE 14(12)
Kategorie:
Research Article
doi:
https://doi.org/10.1371/journal.pone.0225722
Souhrn
Background
Australian healthcare quality and safety accreditation standards recommend health services partner with health care users, to ensure the highest quality of care. Aboriginal Australians with chronic and end stage kidney disease have high health care access needs.
Aim
To describe the experiences of health care users of a large government kidney healthcare service provider.
Methods
Within a government renal health service in the Top-End of the Northern Territory, we undertook a qualitative study involving in-depth interviews with 26 adult clients from urban, regional and remote settings who were living with kidney health conditions.
Results
Client characteristics included a mean age of 55 years, 55% female and 81% identifying as Aboriginal. The kidney related conditions of client participants included CKD (11, 42.3%), haemodialysis (12, 46.2%), peritoneal dialysis (1, 3.9%), and transplant (2, 7.7%). Key themes emerging from patient interviews related to perceived gaps for clients and carers including: 1) knowledge gaps about the health condition, 2) the impact of relocation in order to access centrally-based renal care, 3) healthcare staff professionalism and qualities and 4) service environments. Overall, the experiences centred on a greater need for client-centred, respectful and culturally based healthcare support. Clients recommended the need for patient-led collective care, including sustaining an Indigenous Patient Reference Group to support ongoing healthcare service decision processes. Participants included in almost equal proportion, clients with CKD (without dialysis) and clients utilising renal replacement therapy, which adds significant weight to the client-identified recommendations for highest quality of kidney care across a wide spectrum of kidney function.
Conclusion
Four major themes identified by clients related to their experience with renal care provided by this major regional health care provider: knowledge gaps of their own condition, the lived impacts of relocating to access health care, service environments, and Health Care Provider Quality. An Indigenous Patient Reference Group was one mechanism recommended to support the co-design of preferred care models.
Klíčová slova:
Allied health care professionals – Culture – Health care providers – Health services research – Chronic kidney disease – Kidneys – Medical dialysis – Renal transplantation
Zdroje
1. Australian Commission on Safety and Quality in Health Care. National Safety and Quality Health Service Standards. Sydney: ACSQHC. 2012. Accessed from: https://www.safetyandquality.gov.au/our-work/assessment-to-the-nsqhs-standards/. Access date: 1 March 2019
2. Australian Commission on Safety and Quality in Health Care, National Safety and Quality Health Service Standards, Overview: Improving care for Aboriginal and Torres Strait Islander People (October 2016). Sydney. ACSQHC, 2016. Accessed from: https://www.safetyandquality.gov.au/our-work/assessment-to-the-nsqhs-standards/improving-care-for-aboriginal-and-torres-strait-islander-people/ Access date: 1 March 2019
3. Australia and New Zealand Dialysis and Transplant Registry (ANZDATA). 39th Report, Chapter 12: End Stage Kidney Disease Among Indigenous Peoples of Australia and New Zealand. Australia and New Zealand Dialysis and Transplant Registry, Adelaide, Australia.2017.Accessed from: http://www.anzdata.org.au. Access date: 19 June 2019.
4. Lawton PD, McDonald SP, Snelling PL, Hughes JT, Cass A. Organ Transplantation in Australia: Inequities in Access and Outcome for Indigenous Australians. Transplantation. 2017;101(11):e345–e6. doi: 10.1097/TP.0000000000001911 28858178
5. ANZDATA Registry. 41st Report, Chapter 2: Prevalence of End Stage Kidney Disease. Australia and New Zealand Dialysis and Transplant Registry, Adelaide, Australia. 2018. Available at: http://www.anzdata.org.au. Access date: 19 June 2019
6. Australian Institute of Health and Welfare (AIHW). Geographical variation in chronic kidney disease. Canberra: AIHW. 2017. v19.0. Accessed from: https://www.aihw.gov.au/reports/chronic-kidney-disease/geographical-variation-ckd/contents/contents. Access date: 10 January 2018
7. Hughes JT, Majoni SW, Barzi F, Harris TM, Signal S, Lowah G,. et al. Incident haemodialysis and outcomes in the Top End of Australia. Aust Health Rev 2019; doi: 10.1071/AH18230
8. Y You J, Zhao Y, Lawton P, Guthridge S, McDonald SP, Cass A. Projecting demands for renal replacement therapy in the Northern Territory: a stochastic Markov model. Aust Health Rev. 2018;42(4):380–6. doi: 10.1071/AH16156 28553999
9. Maple-Brown LJ, Hughes JT, Ritte R, Barzi F, Hoy WE, Lawton PD, et al. Progression of Kidney Disease in Indigenous Australians: The eGFR Follow-up Study. Clin J Amer Soc Nephrol. 2016;11:993–1004.
10. Gorham G, Majoni SW, Lawton P, Brown S, Dube B, Conlon T, et al. Interesting times—evolution of dialysis in Australia’s Northern Territory (1980–2014). Ren Soc Aust J, 2018. 14(3).
11. Holwell AJ, Cherian S, Barzi F, Brady S, Hughes JT. Rapid progression of chronic kidney disease in five years prior to haemodialysis initiation in Central Australia. Ren Soc Aust J. 2017;13(1):5–8.
12. Hughes J, Dembski L, Kerrigan V, et al. Indigenous Patient Voices: Gathering Perspectives—Finding Solutions for Chronic and End Stage Kidney Disease. Nephrology. 2018;23:5–13.
13. Hughes J, Cass A. Creating a sustainable health care model for assisted dialysis in very remote Australia. RACP State e-Bulletin, Northern Territory [Internet]. 10 Aug 2018. Accessed from: https://www.racp.edu.au/news-and-events/newsletters-and-communiques/state-enewsletters/northern-territory-august-2018. Access date: 1 March 2019.
14. Population Australia, Darwin Population. [web page] 2019. Accessed from: http://www.population.net.au/darwin-population/. Access date: 1 March 2019.
15. Top End Health Service (TEHS). NT Health Governance. Department of Health, Northern Territory Government; 2019; Accessed from: https://health.nt.gov.au/health-governance/top-end-health-service. Access date: 20 March 2019.
16. Griffin S, Eduardo G, Powell V. Integrated Renal Services Review and Action Plan, Top End Health Service. 2016, Northern Territory Government: Darwin. Accessed from: Ms Sarah Griffin, Access date: 1 March 2019.
17. Kirkham R, Maple-Brown LJ, Freeman N, Beaton B, Lamilami R, Hausin M,. et al. Incorporating Indigenous knowledge in health services: A consumer partnership framework. Public Health. 2018. https://doi.org/10.1016/j.puhe.2018.08.009.
18. Cass A, Lowell A, Christie M, Snelling PL, Flack M, Marrnganyin B, et al., Sharing the true stories: improving communication between Aboriginal patients and healthcare workers. Med J Aust, 2002. 176(10): p. 466–70. doi: 10.5694/j.1326-5377.2002.tb04517.x 12065009
19. Anderson K, Devitt J, Cunningham J, Preece C, Cass A. "All they said was my kidneys were dead": Indigenous Australian patients' understanding of their chronic kidney disease. Med J Aust, 2008. 189(9): p. 499–503. doi: 10.5694/j.1326-5377.2008.tb02144.x 18976191
20. Ilton MK, Walsh WF, Brown ADH, Tideman PA, Zeitz CJ, Wilson J. A framework for overcoming disparities in management of acute coronary syndromes in the Australian Aboriginal and Torres Strait Islander population: A consensus statement from the National Heart Foundation of Australia. Med J Aust, 2014. 200(11): p. 639–643. doi: 10.5694/mja12.11175 24938344
21. Anderson K, Cunningham J, Devitt J, Preece C, Cass A. "Looking back to my family”: Indigenous Australian patients’ experience of hemodialysis. BMC Nephrology, 2012. 13: p. 114. doi: 10.1186/1471-2369-13-114 22992225
22. Russell DJ, Zhao Y, Guthridge S, Ramjan M, Jones MP, Humphreys JS, et al. Patterns of resident health workforce turnover and retention in remote communities of the Northern Territory of Australia, 2013–2015. Hum Resour Health, 2017.15(1): p. 52. doi: 10.1186/s12960-017-0229-9 28810919
23. Hughes J, Lowah G, Kelly J. Re-framing the Indigenous kidney health workforce. Med J Aust 2019;211(1):6–.e1. doi: 10.5694/mja2.50210 31172528
24. Stevens H. Chicago has one female, African-American organ transplant surgeon. She fights disease and distrust of doctors. Medicalxpress. 2019. Accessed from: https://medicalxpress.com/news/2019-03-chicago-female-african-american-transplant-surgeon.html. Access date: 10 March 2019.
25. Topp SM, Edelman A, Taylor S. "We are everything to everyone": a systematic review of factors influencing the accountability relationships of Aboriginal and Torres Strait Islander health workers (AHWs) in the Australian health system. Int J Equity Health. 2018;17(1):67. doi: 10.1186/s12939-018-0779-z 29848331
26. Hoy WE, Davey RL, Sharma S, Hoy PW, Smith JM, Kondalsamy-Chennakesavan S. Chronic disease profiles in remote Aboriginal settings and implications for health services planning. Aust N Z J Public Health, 2010. 34(1): p. 11–8. doi: 10.1111/j.1753-6405.2010.00467.x 20920099
27. Ralph AP, Lowell A, Murphy J, Dias T, Butler D, Spain B, et al. Low uptake of Aboriginal interpreters in healthcare: exploration of current use in Australia's Northern Territory. BMC Health Serv Res. 2017;17(1):733 doi: 10.1186/s12913-017-2689-y 29141623
28. Murdoch-Flowers J, Tremblay MC, Hovey R, Delormier T, Gray-Donald K, Delaronde E, et al. Understanding how Indigenous culturally-based interventions can improve participants' health in Canada. Health Promot Int, 2019. 34(1): p. 154–165. doi: 10.1093/heapro/dax059 28973378
29. DiGiacomo M, Green A, Delaney P, Delaney J, Patradoon-Ho P, Davidson PM, et al. Experiences and needs of carers of Aboriginal children with a disability: a qualitative study. BMC Fam Pract, 2017. 18(1): p. 96. doi: 10.1186/s12875-017-0668-3 29187141
30. Gilbertson EL, Krishnasamy R, Foote C, Kennard AL, Jardine MJ, Gray NA. Burden of Care and Quality of Life Among Caregivers for Adults Receiving Maintenance Dialysis: A Systematic Review. Am J Kid Dis. 2019;73(3):332–43. doi: 10.1053/j.ajkd.2018.09.006 30454885
31. Dingwall KM, Nagel T, Hughes JT, Kavanagh DJ, Cass A, Howard K, et al. Wellbeing intervention for chronic kidney disease (WICKD): a randomised controlled trial study protocol. BMC Psych, 2019. 7(1): p. 2. doi: 10.1186/s40359-018-0264-x
32. Breckenridge K, Bekker HL, Gibbons E, van der Veer SN, Abbott D, Briancon S, et al. How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting. Nephrol Dial Transplant. 2015;30(10):1605–14. doi: 10.1093/ndt/gfv209 25982327
33. Butler TL, Anderson K, Garvey G, Cunningham J, Ratcliffe J, Tong A, et al. Aboriginal and Torres Strait Islander people's domains of wellbeing: A comprehensive literature review. Soc Sci Med. 2019;233:138–57. doi: 10.1016/j.socscimed.2019.06.004 31200269
34. Le Grande M, Ski CF, Thompson DR, Scuffham P, Kularatna S, Jackson AC, et al. Social and emotional wellbeing assessment instruments for use with Indigenous Australians: A critical review. Soc Sci Med. 2017;187:164–73 doi: 10.1016/j.socscimed.2017.06.046 28689090
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