The missing voices of Indigenous Australians in the social, cultural and historical experiences of tuberculosis: a systematic and integrative review

Abstract

IntroductionDisparities in tuberculosis (TB) rates exist between Indigenous and non-Indigenous populations in many countries, including Australia. The social determinants of health are central to health inequities including disparities in TB rates. There are limitations in the dominant biomedical and epidemiological approaches to representing, understanding and addressing the unequal burden of TB for Indigenous peoples represented in the literature. This paper applies a social determinants of health approach and examines the structural, programmatic and historical causes of inequities for TB in Indigenous Australia.MethodsAboriginal Australians’ families in northern New South Wales who are affected by TB initiated this investigation. A systematic search of published literature was conducted using PubMed, PsycINFO, Scopus and Informit ATSIhealth databases, the Australian Indigenous Health, InfoNet and Google. Ninety-five records published between 1885 and 2019 were categorised and graphed over time, inductively coded and thematically analysed.ResultsIndigenous Australians’ voices are scarce in the TB literature and absent in the development of TB policies and programmes. Epidemiological reports are descriptive and technical and avoid analysis of social processes involved in the perpetuation of TB. For Indigenous Australians, TB is more than a biomedical diagnosis and treatment; it is a consequence of European invasion and a contributor to dispossession and the ongoing fight for justice. The introduction and spread of TB has resulted in the stealing of lives, family, community and cultures for Indigenous Australians. Racist policies and practices predominate in the experiences of individuals and families as consequences of, and resulting in, ongoing structural and systematic exclusion.ConclusionDevelopment of TB policies and programmes requires reconfiguration. Space must be given for Indigenous Australians to lead, be partners and to have ownership of decisions about how to eliminate TB. Shared knowledge between Indigenous Australians, policy makers and service managers of the social practices and structures that generate TB disparity for Indigenous Australians is essential.A social determinant of health approach will shift the focus to the social structures that cause TB. Collaboration with Indigenous partners in research is critical, and use of methods that amplify Indigenous peoples' voices and reconfigure power relations in favour of Indigenous Australians in the process is required.

Voices behind the Statistics: A Systematic Literature Review of the Lived Experience of Rheumatic Heart Disease

“…That is, the social practices described in the themes related to empathy/emotional care (being considerate of feelings) and ongoing collective relationships (families and communities), draw attention to the reasons why current individualised biomedical approaches have failed in this setting. As with other similar diseases, such as tuberculosis, biomedical 'technical' responses do not reflect the social nature of RHD [53]. In particular, the domains of Indigenous strengths (history, language, culture, knowledge) identified in the review recognise and reflect specific local realities and social contexts.…”

“…The collective trauma revealed by analysing participant voices points to the need for recognition of ongoing trauma experiences and for this to be addressed in care models for families. A reconfiguration of authority and power relations is required so that Indigenous knowledges and conceptions of health are prioritised, and Indigenous communities have the skills, capacity and opportunities to participate in and control how RHD is to be prevented and managed [53]. Privileging a biomedical approach, rather than seeing biomedicine as only one approach working alongside other disciplines, is to perpetuate the colonising of Indigenous health and continue the high rates of health disparity in the Indigenous population.…”

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“…There is no evidence to suggest that TB was present in Australia prior to European colonisation in 1788, however it did spread rapidly among Aboriginal peoples in southern Australia soon thereafter. 43 , 44 Lineages 4 and 1 were most common among Australian First Nations peoples in the NT Top End. Lineage 4 is the dominant M. tuberculosis lineage in Europe and is predicted to have expanded globally from there subsequent to colonisation of the Americas, Africa and the Asia-Pacific, 19 , 45 with outbreaks reported in First Nations groups previously reported in New Zealand, 28 and Canada.…”

Climate change and infectious diseases in Australia's Torres Strait Islands

“…Although Australia has one of the lowest rates of tuberculosis incidence globally, 64 there is a discrepancy. In 2015, the Australian‐born non‐Indigenous population notification rate was 0.8 per 100,000, but for Indigenous Australians, the rate was 4.8 per 100,000 64,65 . There were 27 cases of tuberculosis recorded in the Torres and Cape between 2014 and 2019, 23 although these rates may include Papua New Guinea nationals seeking treatment on the Torres Strait Islands 65 …”