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International Journal for Equity in Health
Published in: International Journal for Equity in Health 1/2020

Open Access 01-12-2020 | Systematic review

Seldom heard voices: a meta-narrative systematic review of Aboriginal and Torres Strait Islander peoples healthcare experiences

Authors: Benjamin Jones, David Heslop, Reema Harrison

Published in: International Journal for Equity in Health | Issue 1/2020

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Abstract

Background

It is well established that Aboriginal and Torres Strait Islander populations face considerable health inequities, exacerbated by poorer healthcare quality. Patient experience is recognised as a major contributing factor to healthcare quality and outcomes, therefore, enriched knowledge of the patient experiences of Aboriginal and Torres Strait Islander populations is critical to redress health inequities. This review synthesises evidence of the healthcare experiences amongst Aboriginal and Torres Strait Islander patients through a metanarrative synthesis of qualitative literature.

Methods

A systematic search strategy was developed and applied to six electronic databases between January 2000 and July 2019. Titles and abstracts were screened before applying the inclusion criteria to full text articles. A meta-narrative synthesis was undertaken.

Results

Fifty-four publications were identified from four research traditions; each with a unique conceptualisation of patient experience. Three themes emerged that demonstrate Aboriginal and Torres Strait Islander patient experiences are informed by 1) beliefs about wellbeing and healthcare provision, 2) their level of trust in the healthcare system, and 3) individual and community health system interactions. The findings highlight a range of aspects of patient experience that were important to participating Aboriginal and Torres Strait Islanders in the included studies but not captured currently in health system surveys.

Conclusion

This review highlights the influence of beliefs about health and wellbeing on the patient experience amongst Aboriginal and Torres Strait Islander populations in the Australian health system. Patient experiences were informed by past experience and their trust in the health system. The different factors influencing patient experience and the gravity of their influence must be considered in current approaches to capturing patient experience data collection methods.

Trial registration

PROSPERO (ID: CRD42019134765).
Appendix
Available only for authorised users
Footnotes
1
Country is a term used by many Aboriginal and Torres Strait Islander Australians to describe the land of their family and ancestors. The relationship with the physical landscape and the associated feelings of connectedness when on Country are an important part of the Aboriginal and Torres Strait Islander culture.
 
2
‘Shame’ is a specific term used by the Aboriginal community to reflect the deep feelings of embarrassment and uncomfortableness felt in certain circumstances.
 
3
The Aboriginal health peak organisations are the collection of national bodies that represent Aboriginal and Torres Strait Islander health services, allied health professionals, health workers, nurses, and doctors respectively.
 
Literature
1.
Australian Commission on Safety and Quality in Health Care. National Safety and Quality Health Service Standards User Guide for Aboriginal and Torres Strait Islander Health. Sydney: Australian Commission on Safety and Quality in Health Care; 2017.
2.
3.
Kelly J, Dwyer J, Pekarsky B, Mackean T, Willis E, Battersby M, Glover J. Managing two worlds together: stage 2: patient journey mapping tools. Melbourne: The Lowitja Institute; 2012.
4.
Kelly J, Dwyer J, Pekarsky B, Mackean T, McCabe N, Wiseman J, de Crespigny C, O’Donnell K. Managing two worlds together. Stage 3: improving Aboriginal patient journeys - workbook. Melbourne: The Lowitja Institute; 2015.
5.
Kelly J, Dwyer J, Pekarsky B, Mackean T, Willis E, de Crespigny C, Perkins S, O’Donnell K, King R, Mackean L, Brown A, Lawrence M, Dixon K. Managing Two Worlds Together. Stage 3: Improving Aboriginal Patient Journeys - Study Report. Melbourne: The Lowitja Institute; 2015.
6.
Harrison R, Walton M, Manias E, Smith-Merry J, Kelly P, Iedema R, et al. The missing evidence: a systematic review of patients’ experiences of adverse events in health care. Int J Qual Health Care. 2015;27(6):424–42.PubMedCrossRef
7.
Jason A. Defining patient experience. Patient Exp J. 2014;1(1):7–19.
8.
Feirn A, Betts D, Tribble T. The patient experience: strategies and approaches for providers to achieve and maintain a competitive advantage. United States of America: Deloitte LLP; 2009.
9.
10.
Hewitson P, Skew A, Graham C, Jenkinson C, Coulter A. People with limiting long-term conditions report poorer experiences and more problems with hospital care. BMC Health Serv Res. 2014;14:33.PubMedPubMedCentralCrossRef
11.
Leavitt M. Medscape's response to the Institute of Medicine Report: crossing the quality chasm: a new health system for the 21st century. Medscape Gen Med. 2001;3(2):2.
12.
Donabedian A. The quality of care - how can it be assessed. J Am Med Assoc. 1988;260(12):1743–8.CrossRef
13.
14.
15.
Harrison R, Walton M, Manias E. In: Australian Commission on Safety and Quality in Health Care, editor. Patients’ experiences in Australian hospitals: an Evidence Check rapid review. Sydney: Sax Institute; 2015.
16.
17.
National Health System. In: Department of Health, editor. Creating a Patient­ led NHS. England: NHS England; 2015.
18.
Beattie M, Murphy DJ, Atherton I, Lauder W. Instruments to measure patient experience of healthcare quality in hospitals: a systematic review. Syst Rev. 2015;4:97.PubMedPubMedCentralCrossRef
19.
Edwards K, Walker K, Duff J. Instruments to measure the inpatient hospital experience: a literature review. Patient Exp J. 2015;2(2):11.
20.
Sheard L, Peacock R, Marsh C, Lawton R. What's the problem with patient experience feedback? A macro and micro understanding, based on findings from a three-site UK qualitative study. Health Expect. 2019;22(1):46–53.PubMedCrossRef
21.
Entwistle V, Firnigl D, Ryan M, Francis J, Kinghorn P. Which experiences of health care delivery matter to service users and why? A critical interpretive synthesis and conceptual map. J Health Serv Res Policy. 2012;17(2):70–8.PubMedPubMedCentralCrossRef
22.
Marsh C, Peacock R, Sheard L, Hughes L, Lawton R. Patient experience feedback in UK hospitals: what types are available and what are their potential roles in quality improvement (QI)? Health Expect. 2019;22(3):317–26.PubMedPubMedCentralCrossRef
23.
Greenhalgh T, Robert G, Macfarlane F, Bate P, Kyriakidou O, Peacock R. Storylines of research in diffusion of innovation: a meta-narrative approach to systematic review. Soc Sci Med. 2005;61(2):417–30.PubMedCrossRef
24.
25.
Wolf J, Niederhauser V, Marshburn D, LaVela S. Defining patient experience. Patient Exp J. 2014;1(1):7–19.
26.
27.
Kelly J, West R, Gamble J, Sidebotham M, Carson V, Duffy E. She knows how we feel': Australian Aboriginal and Torres Strait Islander childbearing women's experience of continuity of care with an Australian Aboriginal and Torres Strait Islander midwifery student. Women Birth. 2014;27(3):157–62.PubMedCrossRef
28.
Cheng WYC, Blum P, Spain B. Barriers to effective perioperative communication in indigenous australians: an audit of progress since 1996. Anaesth Intensive Care. 2004;32(4):542–7.PubMedCrossRef
29.
Walker M, Fredericks B, Mills K, Anderson D. “Yarning” as a method for community-based health research with indigenous women: the indigenous Women's wellness research program. Health Care Women Int. 2014;35(10):1216–26.PubMedCrossRef
30.
Baba JT, Brolan CE, Hill PS. Aboriginal medical services cure more than illness: a qualitative study of how indigenous services address the health impacts of discrimination in Brisbane communities. Int J Equity Health. 2014;13. https://​doi.​org/​10.​1186/​1475-9276-13-56.
31.
Ban P. Access and attitudes to health care of Torres Strait islanders living in mainland Australia. Aust J Prim Health. 2004;10(2):29–35.CrossRef
32.
Devitt J, Anderson K, Cunningham J, Preece C, Snelling P, Cass A. Difficult conversations: Australian indigenous patients’ views on kidney transplantation. BMC Nephrol. 2017;18:310.PubMedPubMedCentralCrossRef
33.
Hepworth J, Askew D, Foley W, Duthie D, Shuter P, Combo M, et al. How an urban Aboriginal and Torres Strait Islander primary health care service improved access to mental health care. Int J Equity Health. 2015;14:51.PubMedPubMedCentralCrossRef
34.
Homer CSE, Foureur MJ, Allende T, Pekin F, Caplice S, Catling-Paull C. ‘It’s more than just having a baby' women's experiences of a maternity service for Australian Aboriginal and Torres Strait Islander families. Midwifery. 2012;28(4):509–15.CrossRef
35.
Hughes JT, Dembski L, Kerrigan V, Majoni SW, Lawton PD, Cass A. Gathering perspectives - finding solutions for chronic and end stage kidney disease. Nephrology. 2018;23:5–13.PubMedCrossRef
36.
Jowsey T, Yen L, Ward N, Mcnab J, Aspin C, Usherwood T, et al. It hinges on the door: time, spaces and identity in Australian Aboriginal health services. Health Sociol Rev. 2012;21(2):196–207.CrossRef
37.
Lowell A, Maypilama E, Yikaniwuy S, Rrapa E, Williams R, Dunn S. “Hiding the story”: indigenous consumer concerns about communication related to chronic disease in one remote region of Australia. Int J Speech-Lang Pa. 2012;14(3):200–8.CrossRef
38.
Shahid S, Teng THK, Bessarab D, Aoun S, Baxi S, Thompson SC. Factors contributing to delayed diagnosis of cancer among Aboriginal people in Australia: a qualitative study. Br Med J Open. 2016;6(6):6.
39.
Smith K, Fatima Y, Knight S. Are primary healthcare services culturally appropriate for Aboriginal people? Findings from a remote community. Aust J Prim Health. 2017;23(3):236–42.PubMedCrossRef
40.
Strong J, Nielsen M, Williams M, Huggins J, Sussex R. Quiet about pain: experiences of Aboriginal people in two rural communities. Aust J Rural Health. 2015;23(3):181–4.PubMedCrossRef
41.
Taylor KP, Thompson SC, Smith JS, Dimer L, Ali M, Wood MM. Exploring the impact of an Aboriginal health worker on hospitalised Aboriginal experiences: lessons from cardiology. Aust Health Rev. 2009;33(4):549–57.PubMedCrossRef
42.
Brown A. Acute coronary syndromes in indigenous Australians: opportunities for improving outcomes across the continuum of care. Heart, Lung Circ. 2010;19(5–6):325–36.CrossRef
43.
Campbell S, Brown S. Maternity care with the Women's business Service at the Mildura Aboriginal Health Service. Aust N Z J Public Health. 2004;28(4):376–82.PubMedCrossRef
44.
Corcoran PM, Catling C, Homer CSE. Models of midwifery care for indigenous women and babies: a meta-synthesis. Women Birth. 2017;30(1):77–86.PubMedCrossRef
45.
Einsiedel LJ, van Iersel E, Macnamara R, Spelman T, Heffernan M, Bray L, et al. Self-discharge by adult Aboriginal patients at Alice Springs hospital, Central Australia: insights from a prospective cohort study. Aust Health Rev. 2013;37(2):239–45.PubMedCrossRef
46.
Harrington Z, Thomas DP, Currie BJ, Bulkanhawuy J. Challenging perceptions of non-compliance with rheumatic fever prophylaxis in a remote Aboriginal community. Med J Australia. 2006;184(10):514–7.PubMedCrossRef
47.
Munro A, Allan J, Shakeshaft A, Breen C. “I just feel comfortable out here, there's something about the place”: staff and client perceptions of a remote Australian Aboriginal drug and alcohol rehabilitation service. Subst Abuse Treat Pr. 2017;12:49.CrossRef
48.
Reilly R, Micklem J, Yerrell P, Banham D, Morey K, Stajic J, et al. Aboriginal experiences of cancer and care coordination: lessons from the Cancer Data and Aboriginal Disparities (CanDAD) narratives. Health Expect. 2018;21(5):927–36.PubMedPubMedCentralCrossRef
49.
Kuhn TS. The Structure of scientific revolutions, vol. xii. 2nd ed. Chicago: University of Chicago Press; 1970. p. 210.
50.
Chapman R, Smith T, Martin C. Qualitative exploration of the perceived barriers and enablers to Aboriginal and Torres Strait Islander people accessing healthcare through one Victorian emergency department. Contemp Nurse. 2014;48(1):48–58.PubMedCrossRef
51.
Foley W, Houston A. Closing the gap by increasing access to clinical dietetic services for urban Aboriginal and Torres Strait Islander people. Nutr Diet. 2014;71(4):216–22.CrossRef
52.
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 Australia. 2008;189(9):499–503.PubMedCrossRef
53.
Canuto K, Wittert G, Harfield S, Brown A. “I feel more comfortable speaking to a male”: Aboriginal and Torres Strait Islander men's discourse on utilizing primary health care services. Int J Equity Health. 2018;17:185.PubMedPubMedCentralCrossRef
54.
Webster E, Johnson C, Kemp B, Smith V, Johnson M, Townsend B. Theory that explains an Aboriginal perspective of learning to understand and manage diabetes. Aust N Z J Public Health. 2017;41(1):27–31.PubMedCrossRef
55.
Fredericks B. Utilising the concept of pathway as a framework for indigenous research. Aust J Indig Educ. 2007;36:15–22.CrossRef
56.
Artuso S, Cargo M, Brown A, Daniel M. Factors influencing health care utilisation among Aboriginal cardiac patients in Central Australia: a qualitative study. BMC Health Serv Res. 2013;13:83.PubMedPubMedCentralCrossRef
57.
Aspin C, Brown N, Jowsey T, Yen L, Leeder S. Strategic approaches to enhanced health service delivery for Aboriginal and Torres Strait Islander people with chronic illness: a qualitative study. BMC Health Serv Res. 2012;12:143.PubMedPubMedCentralCrossRef
58.
Freeman T, Edwards T, Baum F, Lawless A, Jolley G, Javanparast S, et al. Cultural respect strategies in Australian Aboriginal primary health care services: beyond education and training of practitioners. Aust N Z J Public Health. 2014;38(4):355–61.PubMedCrossRef
59.
National Aboriginal Health Strategy Working Party. National Aboriginal Health Strategy. Canberra: Commonwealth of Australia; 1989.
60.
Anderson K, Cunningham J, Devitt J, Preece C, Cass A. “Looking back to my family”: indigenous Australian patients’ experience of hemodialysis. BMC Nephrol. 2012;13:114.PubMedPubMedCentralCrossRef
61.
Conway J, Lawn S, Crail S, McDonald S. Indigenous patient experiences of returning to country: a qualitative evaluation on the country health SA Dialysis bus. BMC Health Serv Res. 2018;18:1010.PubMedPubMedCentralCrossRef
62.
Dembinsky M. Exploring Yamatji perceptions and use of palliative care: an ethnographic study. Int J Palliat Nurs. 2014;20(8):387–93.PubMedCrossRef
63.
Green M, Anderson K, Griffiths K, Garvey G, Cunningham J. Understanding indigenous Australians ‘experiences of cancer care: stakeholders’ views on what to measure and how to measure it. BMC Health Serv Res. 2018;18(1):982.PubMedPubMedCentralCrossRef
64.
McGrath P. Exploring Aboriginal peoples’ experience of relocation for treatment during end-of-life care. Int J Palliat Nurs. 2006;12(3):102–8.PubMedCrossRef
65.
Shahid S, Finn L, Bessarab D, Thompson SC. ‘Nowhere to room ... nobody told them’: logistical and cultural impediments to Aboriginal peoples’ participation in cancer treatment. Aust Health Rev. 2011;35(2):235–41.PubMedCrossRef
66.
Burnette L, Kickett M. ‘You are just a puppet’: Australian Aboriginal people's experience of disempowerment when undergoing treatment for end-stage renal disease. Renal Soc Aust J. 2009;5(3):113–8.
67.
Davies J, Bukulatjpi S, Sharma S, Davis J, Johnston V. “Only your blood can tell the story” - a qualitative research study using semi-structured interviews to explore the hepatitis B related knowledge, perceptions and experiences of remote dwelling indigenous Australians and their health care providers in northern Australia. BMC Public Health. 2014;14:1233.PubMedPubMedCentralCrossRef
68.
Fredericks B, Kinnear S, Daniels C. Exploring knowledge, experiences and perceptions of chronic health conditions. Aboriginal Islander Health Worker J. 2016;40:17–8.
69.
Rix EF, Barclay L, Stirling J, Tong A, Wilson S. ‘Beats the alternative but it messes up your life’: Aboriginal people's experience of haemodialysis in rural Australia. Br Med J Open. 2014;4(9):9.
70.
Thompson SC, Shahid S, Bessarab D, Durey A, Davidson PM. Not just bricks and mortar: planning hospital cancer services for Aboriginal people. BMC Res Notes. 2011;4:62.PubMedPubMedCentralCrossRef
71.
Treloar C, Gray R, Brener L, Jackson C, Saunders V, Johnson P, et al. “I can't do this, it's too much”: building social inclusion in cancer diagnosis and treatment experiences of Aboriginal people, their carers and health workers. Int J Public Health. 2014;59(2):373–9.PubMedCrossRef
72.
Mbuzi V, Fulbrook P, Jessup M. Indigenous cardiac patients’ and relatives’ experiences of hospitalisation: a narrative inquiry. J Clin Nurs. 2017;26(23–24):5052–64.PubMedCrossRef
73.
Meiklejohn JA, Garvey G, Bailie R, Walpole E, Adams J, Williamson D, et al. Follow-up cancer care: perspectives of Aboriginal and Torres Strait Islander cancer survivors. Support Care Cancer. 2017;25(5):1597–605.PubMedCrossRef
74.
Shahid S, Finn L, Bessarab D, Thompson SC. Understanding, beliefs and perspectives of Aboriginal people in Western Australia about cancer and its impact on access to cancer services. BMC Health Serv Res. 2009;9:132.PubMedPubMedCentralCrossRef
75.
Gomersall JS, Gibson O, Dwyer J, O'Donnell K, Stephenson M, Carter D, et al. What indigenous Australian clients value about primary health care: a systematic review of qualitative evidence. Aust N Z J Public Health. 2017;41(4):417–23.PubMedCrossRef
76.
Jobling K, Lau P, Kerr D, Higgins RO, Worcester MU, Angus L, et al. Bundap Marram Durn Durn: engagement with Aboriginal women experiencing comorbid chronic physical and mental health conditions. Aust N Z J Public Health. 2016;40:30–5.CrossRef
77.
McMichael C, Kirk M, Manderson L, Hoban E, Potts H. Indigenous women’s perceptions of breast cancer diagnosis and treatment in Queensland. Aust N Z J Public Health. 2000;24(5):515–9.PubMedCrossRef
78.
Rix EF, Barclay L, Stirling J, Tong A, Wilson S. The perspectives of Aboriginal patients and their health care providers on improving the quality of hemodialysis services: a qualitative study. Hemodial Int. 2015;19(1):80–9.PubMedCrossRef
79.
Jan S, Conaty S, Hecker R, Bartlett M, Delaney S, Capon T. An holistic economic evaluation of an Aboriginal community-controlled midwifery programme in Western Sydney. J Health Serv Res Policy. 2004;9(1):14–21.PubMedCrossRef
80.
Wotherspoon C, Williams CM. Exploring the experiences of Aboriginal and Torres Strait Islander patients admitted to a metropolitan health service. Aust Health Rev. 2019;43(2):217–23.PubMedCrossRef
81.
Govil D, Lin I, Dodd T, Cox R, Moss P, Thompson S, et al. Identifying culturally appropriate strategies for coronary heart disease secondary prevention in a regional Aboriginal medical service. Aust J Prim Health. 2014;20(3):266–72.PubMedCrossRef
82.
Worrall-Carter L, Daws K, Rahman MA, MacLean S, Rowley K, Andrews S, et al. Exploring Aboriginal patients’ experiences of cardiac care at a major metropolitan hospital in Melbourne. Aust Health Rev. 2016;40(6):696–704.PubMedCrossRef
83.
Brener L, Wilson H, Jackson LC, Johnson P, Saunders V, Treloar C. Experiences of diagnosis, care and treatment among Aboriginal people living with hepatitis C. Aust N Z J Public Health. 2016;40:59–64.CrossRef
84.
Tam L, Garvey G, Meiklejohn J, Martin J, Adams J, Walpole E, et al. Exploring positive survivorship experiences of Indigenous Australian cancer patients. Int J Env Res Pub He. 2018;15(1):135.CrossRef
85.
Harrison R, Walton M, Manias E, Mears S, Plumb J. Patients’ experiences in Australian hospitals: a systematic review of evidence. Aust Health Rev. 2017;41(4):419–35.PubMedCrossRef
86.
Dwyer J, Kelly J, Willis E, Glover J, Mackean T, Pekarsky B, Battersby M. Managing two worlds together: city hospital care for country Aboriginal people - project report. Melbourne: The Lowitja Institute; 2011.
87.
Australian Institute of Health and Welfare. Indigenous health and wellbeing. Australia’s health 2018. Australia’s health series no. 16. AUS 221. Canberra: AIHW; 2018.
88.
Bureau of Health Information. Patient perspectives – hospital care for Aboriginal people. Sydney: Patient perspectives – hospital care for aboriginal people; 2016.
89.
Campinha-Bacote J. The process of cultural competence in the delivery of healthcare services: a model of care. J Transcult Nurs. 2002;13(3):181–4 discussion 200-1.PubMedCrossRef
Metadata
Title
Seldom heard voices: a meta-narrative systematic review of Aboriginal and Torres Strait Islander peoples healthcare experiences
Authors
Benjamin Jones
David Heslop
Reema Harrison
Publication date
01-12-2020
Publisher
BioMed Central
Published in
International Journal for Equity in Health / Issue 1/2020
Electronic ISSN: 1475-9276
DOI
https://doi.org/10.1186/s12939-020-01334-w

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