Measuring health care experiences that matter to Indigenous people in Australia with cancer: identifying critical gaps in existing tools.
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Date
2021-04-22
Author(s)
Journal Title
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Affiliation(s)
(Green, Cunningham, Anderson, Griffiths, Garvey) Wellbeing and Preventable Chronic Diseases Division, Menzies School of Health Research, Charles Darwin University, Level 10, East Tower, 410 Ann Street, Brisbane, QLD 4000, Australia
(Griffiths) Centre for Big Data Research in Health, University of New South Wales, Sydney, Australia
(Griffiths) Centre for Big Data Research in Health, University of New South Wales, Sydney, Australia
Year
2021
Citation
International Journal for Equity in Health. Vol.20(1), 2021.
Journal
International Journal for Equity in Health
Conference name
Conference location
Grant information
Organisation: (ACMM) Australian Centre for Microscopy and Microanalysis, University of Sydney Organisation No: 100013045 Country: Australia
Organisation: (NCCH) National Centre for Classification in Health, University of Sydney Organisation No: 501100017572 Country: Australia
Organisation: (Usyd) University of Sydney Organisation No: 501100001774 Country: Australia
Organisation: Cancer Council Western Australia Organisation No: 501100001170 Country: Australia
Organisation: Discipline of Obstetrics, Gynaecology and Neonatology, University of Sydney Organisation No: 501100006150 Country: Australia
Organisation: Faculty of Education and Social Work, University of Sydney Organisation No: 501100001196 Country: Australia
Organisation: Faculty of Engineering, University of Sydney Organisation No: 501100015210 Country: Australia
Organisation: Lowitja Institute Organisation No: 501100004148 Country: Australia
Organisation: Marie Bashir Institute, University of Sydney Organisation No: 501100011890 Country: Australia
Organisation: Sydney Environment Institute, University of Sydney Organisation No: 501100017477 Country: Australia
Organisation: Sydney Southeast Asia Centre, University of Sydney Organisation No: 501100011050 Country: Australia
Organisation: United States Studies Centre, University of Sydney Organisation No: 501100001248 Country: Australia
No: 1041111 Organisation: (NHMRC) National Health and Medical Research Council Organisation No: 501100000925 Country: Australia
No: 1058244 Organisation: (NHMRC) National Health and Medical Research Council Organisation No: 501100000925 Country: Australia
No: 1153027 Organisation: (NHMRC) National Health and Medical Research Council Organisation No: 501100000925 Country: Australia
No: 1176651 Organisation: (NHMRC) National Health and Medical Research Council Organisation No: 501100000925 Country: Australia
No: SRP 13-01 Organisation: Cancer Council NSW Organisation No: 501100001102 Country: Australia
Organisation: (NCCH) National Centre for Classification in Health, University of Sydney Organisation No: 501100017572 Country: Australia
Organisation: (Usyd) University of Sydney Organisation No: 501100001774 Country: Australia
Organisation: Cancer Council Western Australia Organisation No: 501100001170 Country: Australia
Organisation: Discipline of Obstetrics, Gynaecology and Neonatology, University of Sydney Organisation No: 501100006150 Country: Australia
Organisation: Faculty of Education and Social Work, University of Sydney Organisation No: 501100001196 Country: Australia
Organisation: Faculty of Engineering, University of Sydney Organisation No: 501100015210 Country: Australia
Organisation: Lowitja Institute Organisation No: 501100004148 Country: Australia
Organisation: Marie Bashir Institute, University of Sydney Organisation No: 501100011890 Country: Australia
Organisation: Sydney Environment Institute, University of Sydney Organisation No: 501100017477 Country: Australia
Organisation: Sydney Southeast Asia Centre, University of Sydney Organisation No: 501100011050 Country: Australia
Organisation: United States Studies Centre, University of Sydney Organisation No: 501100001248 Country: Australia
No: 1041111 Organisation: (NHMRC) National Health and Medical Research Council Organisation No: 501100000925 Country: Australia
No: 1058244 Organisation: (NHMRC) National Health and Medical Research Council Organisation No: 501100000925 Country: Australia
No: 1153027 Organisation: (NHMRC) National Health and Medical Research Council Organisation No: 501100000925 Country: Australia
No: 1176651 Organisation: (NHMRC) National Health and Medical Research Council Organisation No: 501100000925 Country: Australia
No: SRP 13-01 Organisation: Cancer Council NSW Organisation No: 501100001102 Country: Australia
Abstract
Background: Measurement of patients' healthcare experiences is increasingly used as an indicator of quality of care, but there are concerns that existing measures omit information that is meaningful to patients and that results may not be used systematically to inform service improvement. Further, current approaches may be inadequate for some population groups, such as Indigenous people in Australia, whose healthcare experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the Western biomedical health system. This study aimed to assess the extent to which existing patient experience measures used in Australia collect information about critical aspects of cancer care, as previously identified by Indigenous people affected by cancer and their health care providers. Method(s): A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures selected as suitable comparators; (2) comparators were examined in detail and mapped against topics identified in earlier research as important to Indigenous people with cancer. Gaps in topic coverage in comparators were identified. Result(s): No comparators completely captured the critical aspects of cancer care identified by Indigenous people affected by cancer and their health care providers. The number of topics 'partially' captured by the four comparators ranged from 4 to 7 out of 9. While most topics were partially covered, the lack of questions around culture and cultural safety was notable. Conclusion(s): Existing tools are likely to miss key aspects of Indigenous peoples' experiences of cancer care in Australia. Failure to adequately assess care experiences related to cultural safety may compromise efforts to improve health outcomes. Addressing gaps requires development of experience measures that are strengths-based, reflect an Indigenous worldview and measure aspects of experience relevant to Indigenous people.Copyright © 2021, The Author(s).
PubMed ID
33845852 [https://www.ncbi.nlm.nih.gov/pubmed/?term=33845852]
Type
Article
Study type
Subjects
Social determinants of health