There seems to be a myth in Australia that Aboriginal and Torres Strait Islander people mostly live in remote communities. But the vast majority (79%) live in urban areas. The federal government has rightly decided the best policy to protect Indigenous people from COVID-19 is to socially isolate remote communities. Now the government needs to turn its attention to the risks Indigenous people face in urban and rural areas.
ABSTRACTObjectivesWith the life expectancy of Aboriginal Australians 10 years less than non-Aboriginal Australians, administrative health datasets are essential tools to identify disparities and track changes over time. However, the Aboriginal status of individuals is often inconsistently recorded within, and across, datasets and Aboriginal people are frequently undercounted. Therefore, information from multiple linked records is often used resolve inconsistencies and undercount. However, very different algorithms are used and their performance is poorly understood.
We aimed to (i) assess the relative accuracy of three common algorithms by comparing how consistently family members were categorised; (ii) develop a new algorithm that incorporates information about the Aboriginal status of family members; and (iii) investigate the impact of these algorithms on estimates of health outcomes.
ApproachOur sample was people born from 1980 onwards recorded as Aboriginal at least once in 6 Western Australian datasets, as well as their Aboriginal and non-Aboriginal family members.
We applied the most inclusive algorithm, 'ever-Aboriginal' (EA, any record of being Aboriginal), and two more specific algorithms, 'multi-stage median' (MSM) and 'last record' (LR), to linked birth, birth registration, birth defects and hospital inpatient records. We also supplemented these algorithms with information from any children's birth records (EA+, MSM+ and LR+). Finally, we used records from all family members to derive a final Aboriginal status (MSM+ with family), using a range of decision rules, such as classifying someone as Aboriginal if they had two full siblings categorised as Aboriginal.
ResultsEA+ classified 61% of our sample of 156,426 people as Aboriginal, compared with only 51% for LR.
MSM+ resulted in the most consistent classification of full siblings; only 8% of pairs had one sibling identified as non-Aboriginal and the other as Aboriginal, compared with 14% using EA+. MSM+ also performed best with parent-child triads; the classifications of the child and parents were inconsistent in only 8% of cases, compared with 27% using EA.
The proportions of low birthweight babies were similar for EA+, MSM+ and MSM+ with family, (10.6%, 10.8% and 10.8%, respectively). Stillbirth rates were also similar. However, an estimated 46% of mothers smoked during pregnancy for EA+, compared with 50% for both MSM+ and MSM+ with family.
ConclusionOf the 6 algorithms examined, MSM+ assigned Aboriginal status most consistently and EA was the least reliable. Estimates of health outcomes were worse for Aboriginal people when the more consistent algorithms were used. However, the differences were generally small.
IntroductionLow birthweight is common among Aboriginal infants. Birthweight is correlated across generations due to the transmission of genetic and environmental factors. Another cause may be fetal programming, where a fetus' response to a hostile environment leads to poor adult health and, in turn, a poor uterine environment for her offspring.
Objectives and ApproachIdentifying a causal relationship between maternal birthweight and offspring birthweight is difficult. However, we can gain insights by approaching the question from several different angles, including family studies involving both parents and cousins who share maternal grandparents. Family studies using linked data are possible with data from Western Australia (WA), the only Australian state with a database of family relationships.
We used linked birth, hospital, mental health, and family relationship records of 12,865 Aboriginal singletons born 1998 to 2011 in WA whose mother also linked to a WA birth record from 1980 onwards, and their parents' records.
Results17% of births were small for gestational age. Using a linear regression model with a generalised estimating equation approach for offspring birthweight z-score (BWZ), the coefficient for maternal BWZ was 0.17 (95% CI: 0.14, 0.20), compared to 0.13 (95% CI: 0.10, 0.16) for paternal BWZ. The difference in coefficients (0.03 [95% CI: -0.01, 0.08]) provides only limited support for the fetal programming hypothesis. Other associations with offspring BWZ were much larger, including maternal smoking (-0.39 [95% CI: -0.45, -0.34]). After restricting the sample to cousins with shared maternal grandparents (fixed-effects model), the mother-offspring association was fully attenuated (-0.01 [95% CI: -0.07, 0.05]), suggesting transmission of maternal genetic and environmental factors alone can explain the association, though the 95% confidence interval was wide.
Conclusion/ImplicationsIf fetal programming is an important cause of low birthweight, Aboriginal people would be disproportionately affected, following generations of low birthweight and chronic disease. However, the family studies indicate fetal programming has a limited role compared to other risk factors in the current pregnancy.
ObjectivesTo understand in greater detail the rates of interaction Indigenous children have with the child protection system in Western Australia and how they vary by birth year, geographic region, and between family units. ApproachWe used data linkage between the Western Australian Department of Communities (child protection data), the Midwives Notification System, and Deaths Registry. Our cohort consisted of all Aboriginal and/or Torres Strait Islander children born in Western Australia between 2000 and 2013, with child protection data available from 2000 to 2015. We used cumulative incidence curves to visualise the overall rates of interactions with the child protection system and decompose interactions using seven two-year birth cohorts, geographic child protection regions and family units. ResultsOverall, the cohort there was a high level involvement of Indigenous children in the child protection system, with over 50% having at least one notification, 27% having a substantiated notification, and 15% ever having a placement in out-of-home care. When examining by birth cohort, the more recently born the birth cohort the earlier their first interactions with the child protection system tended to be. Results for the geographic and family unit analyses will be presented as this work is ongoing. ConclusionIncreasing interactions occurring at earlier ages coincides with legislative and policy changes. The increase in placement in out-of-home care before the age of 1 for the most recently born cohorts warrants further investigation into whether this is occurring across the system or within particular communities or regions.
ObjectivesTo reflect on my position as a settler person in Australia and ensure Indigenous voices are prioritised throughout my research, as part of a co-designed, Aboriginal-led study which aims to understand trends in the removal of Indigenous children born in Western Australia using data linkage and qualitative research. ApproachAs a non-Indigenous person, it is important to reflect on my cultural background and acknowledge my limited understanding of the cultural context of the Indigenous communities represented in the data. Listening to Indigenous voices and collaborating with Indigenous peoples at all stages of my research – from my PhD supervisor to investigators on the broader study, to members of the community and policy reference groups – will be key to improve my understanding of the data from a system and context I am unfamiliar with. ResultsCollaboration has been cyclical, with results from the qualitative research and discussion with the reference groups informing the initial quantitative research direction. Findings from this research were presented back to the groups, resulting in further questions and directions to explore. The journey so far has been one of learning and understanding the skills I have and the role they can play whilst acknowledging the limits of my own knowledge and the need for Indigenous voices to guide the research in order to be doing research with Indigenous peoples, rather than on them. ConclusionCo-design with Indigenous peoples is critical for doing research which affects them or uses data from their communities. Understanding my own cultural background and acknowledging the limitations of my experience continues to be important for honest and meaningful collaboration.
Until the recent death in Dubbo of an Aboriginal man, there have been no deaths from Covid 19 in Australia. The extraordinary success of Aboriginal and Torres Strait Islander populations in controlling the effects of this pandemic has been a global role model. Until early 2021, in spite of their high risk status, dispersed population and fear of health services due to racism, Indigenous outcomes were better than those for non-Indigenous. Aboriginal health leaders at every level brought in worlds best practices and applied them in all urban, rural and remote locations. Instead of the many hundreds of cases, hospitalisation and deaths expected, there were only 150 cases nationwide with15% hospitalised but no one in ICU and no deaths. This result is a complete reversal of the gap and was due to the outstanding Indigenous leadership, that governments at all levels listened to Aboriginal wisdom and that control was handed to those who knew what to do. This result is not only evidence for why a Voice enshrined in the Constitution would work, it heralds a new way of working with Aboriginal people in Australia. This viewpoint makes the case for a different model to engage and empower First Nations to really close the gap - themselves.
IntroductionStudies of select groups (e.g. pre-industrial or subsistence farming populations) suggest that children had improved survival if their grandparents were alive, particularly maternal grandmothers (MGMs). This question is unanswered for Aboriginal Australian communities, where care of children is commonly shared by extended family members, and it is not known if this association holds for physical health in addition to mortality.
Objectives and ApproachWe examined relationships between the health of Aboriginal children born in Western Australia from 2000 to 2013 and the health and vital status of their grandparents. Birth, death, inpatient hospital and emergency department records of all Aboriginal children and their grandparents were linked. Grandparents were categorised as 'healthy' (alive with Charlson comorbidity index score of 0 or 1), 'unhealthy' (alive with a score of 2 or more), or dead when the child was born.
Results27,425 Aboriginal children linked to their MGM (at a minimum). Mortality up to age 2 was lower with healthy grandparents than unhealthy or dead grandparents (e.g. 11 deaths per 1000 live births with healthy MGM; 22 with unhealthy MGMs and 16 with dead MGMs). Children also had fewer acute healthcare contacts (e.g. 13% with healthy MGMs spent at least 7 days in hospital in their first 2 years compared with 19% with unhealthy or dead MGMs). However, healthcare contacts was largely unrelated to grandfathers. Outcomes were also associated with the number of living grandmothers. (e.g. 1.5% of children with 2 grandmothers were discharged against medical advice in their first 2 years, compared to 2.7% with one healthy grandmother and 3.7% with no grandmothers).
Conclusion / ImplicationsChildren with healthy grandmothers have lower mortality and morbidity, possibly because of their care giving. These associations are unlikely to be due to genetic or environmental factors, as they are weaker or missing for grandfathers.
IntroductionOn average, Aboriginal neonates in Western Australia (WA) weigh 200g less than non-Aboriginal infants and are 2-3 times more likely to be preterm, stillborn, or die neonatally. They are also more likely to be exposed in utero to maternal behaviour risks like smoking, due to factors such as intergenerational trauma.
Objectives and ApproachWe aimed to estimate the proportion of small for gestational age (SGA) births, preterm births, and perinatal deaths of Western Australian Aboriginal infants from 1998-2010 attributable to maternal smoking, alcohol misuse, drug misuse, and assault against the mother. We used linked birth, hospital, mental health, and death records of all Aboriginal singletons and their parents. Using logistic regression with a generalized estimating equation approach, associations between birth outcomes and the four risk factors of interest were estimated after adjusting for maternal age, height and health. Using coefficients from these models, we estimated adjusted population attributable fractions (PAFs).
ResultsOf 28,119 births, 16% of infants were SGA, 13% were preterm and 2% died perinatally. 51% of infants were exposed to maternal smoking, alcohol misuse, drug misuse, and/or assault, and 37% [95% CI: 35%, 40%] of SGA births, 16% [95% CI: 14%, 19%] of preterm births and 20% [95% CI: 12%, 28%] of perinatal deaths were attributable to these factors, predominantly smoking. The PAFs for alcohol misuse (for example, for SGA, 3% [95% CI: 2%, 3%]) are likely to be underestimates as it is difficult to identify alcohol misuse using administrative data.
Conclusion/ImplicationsWhile smoking rates have dropped considerably, reduction measures have been less successful among Aboriginal women than non-Aboriginal women. Significant improvements in perinatal health are possible with identification and support of effective risk reduction approaches for Aboriginal women, as well as their communities and families.
IntroductionMultifetal pregnancies and births tend to be more complicated and have poorer outcomes than singleton pregnancies. Singleton pregnancies and perinatal outcomes are worse, on average, for Indigenous people than non-Indigenous people, but little is known about Indigenous multifetal pregnancies.
Objectives and ApproachWe comprehensively describe and compare Indigenous twin and singleton pregnancies and births in Western Australia (WA) and New South Wales (NSW) and compare to NSW non-Indigenous pregnancies and births. Birth records and infant and maternal hospital records were linked for births during 2000-2013 (WA) and 2002-2008 (NSW). Time travelled for the birth was based on the distance from the hospital to the centroid of the mother's geographical residential area.
ResultsIn the Indigenous populations, mothers of twins had poorer health than mothers of singletons (e.g. in WA, 19% of mothers of twins had hypertension/pre-eclampsia/eclampsia vs 9% of mothers of singletons). They were more likely to have antenatal care during the first trimester (e.g. 69% vs 64% in NSW), though less likely than non-Indigenous mothers of both twins (80%) and singletons (75%).The majority of Indigenous twins were born in a hospital with a neonatal intensive care unit (NICU) (e.g. 66% vs 26% in WA) and many mothers of twins travelled further for the birth (e.g. 8% of mothers of Indigenous twins in NSW travelled 3 hours or more vs 4% of mothers of singletons). In both jurisdictions, outcomes were worse for twins than singletons (e.g. 67% of twins in WA were preterm vs 13% of singletons and 30% of twins were admitted to a NICU vs 6% of singletons).
Conclusion / ImplicationsMothers of Indigenous twins faced significant challenges during the pregnancy, birth and the postnatal period in hospital and, in addition to accessible specialist medical care, these mothers may need practical and psychosocial support throughout their journey.
Introduction: Australian Aboriginal children are more likely than non-Aboriginal children to have developmental vulnerability at school entry that tracks through to poorer literacy and numeracy outcomes and multiple social and health disadvantages in later life. Empirical evidence identifying the key drivers of positive early childhood development in Aboriginal children, and supportive features of local communities and early childhood service provision, are lacking. Methods and analysis: The study population will be identified via linkage of Australian Early Development Census data to perinatal and birth registration data sets. It will include an almost complete population of children who started their first year of full-time school in New South Wales (NSW), Australia, in 2009 and 2012. Early childhood health and development trajectories for these children will be constructed via linkage to a range of administrative data sets relating to birth outcomes, congenital conditions, hospital admissions, emergency department presentations, receipt of ambulatory mental healthcare services, use of general practitioner services, contact with child protection and out-of-home care services, receipt of income assistance and fact of death. Using multilevel modelling techniques, we will quantify the contributions of individual-level and area-level factors to variation in early childhood development outcomes in Aboriginal and non-Aboriginal children. Additionally, we will evaluate the impact of two government programmes that aim to address early childhood disadvantage, the NSW Aboriginal Maternal and Infant Health Service and the Brighter Futures Program. These evaluations will use propensity score matching methods and multilevel modelling. Ethics and dissemination: Ethical approval has been obtained for this study. Dissemination mechanisms include engagement of stakeholders (including representatives from Aboriginal community controlled organisations, policy agencies, service providers) through a reference group, and writing of summary reports for policy and community audiences in parallel with scientific papers.
Introduction: Australian Aboriginal children are more likely than non-Aboriginal children to have developmental vulnerability at school entry that tracks through to poorer literacy and numeracy outcomes and multiple social and health disadvantages in later life. Empirical evidence identifying the key drivers of positive early childhood development in Aboriginal children, and supportive features of local communities and early childhood service provision, are lacking. Methods and analysis: The study population will be identified via linkage of Australian Early Development Census data to perinatal and birth registration data sets. It will include an almost complete population of children who started their first year of full-time school in New South Wales (NSW), Australia, in 2009 and 2012. Early childhood health and development trajectories for these children will be constructed via linkage to a range of administrative data sets relating to birth outcomes, congenital conditions, hospital admissions, emergency department presentations, receipt of ambulatory mental healthcare services, use of general practitioner services, contact with child protection and out-of-home care services, receipt of income assistance and fact of death. Using multilevel modelling techniques, we will quantify the contributions of individual-level and area-level factors to variation in early childhood development outcomes in Aboriginal and non-Aboriginal children. Additionally, we will evaluate the impact of two government programmes that aim to address early childhood disadvantage, the NSW Aboriginal Maternal and Infant Health Service and the Brighter Futures Program. These evaluations will use propensity score matching methods and multilevel modelling. Ethics and dissemination: Ethical approval has been obtained for this study. Dissemination mechanisms include engagement of stakeholders (including representatives from Aboriginal community controlled organisations, policy agencies, service providers) through a reference group, and writing of summary reports for policy and community audiences in parallel with scientific papers.
Background Historically, Aboriginal health research in Australia has been non-participatory, misrepresentative, and has produced few measurable improvements to community health. The Study of Environment on Aboriginal Resilience and Child Health (SEARCH) was established to co-create and co-translate research. Over the past decade, SEARCH has built a sustainable partnership across policy, research, clinical and Aboriginal community sectors which has resulted in improvements in Aboriginal health through enhanced services, policies and programmes.
Aims and objectives This study describes the critical success factors behind SEARCH, focusing on how SEARCH was established, and continues to build trusting co-creative relationships. It also explores some continuing challenges and considers how the partnership might be strengthened. Methods Semi-structured interviews were conducted with 26 stakeholders, purposively selected to obtain maximum diversity of roles and perspectives. Interview questions explored concepts that informed the development of SEARCH such as trust, transparency, leadership, governance, reciprocity and empowerment. Data was analysed thematically and written up using the qualitative description approach.
Findings and discussion Nine critical success factors were identified: shared power; strong credible leadership; shared vision, shared goals; willingness to take risks; connecting across cultures; empowering the community; valuing local Aboriginal knowledge; ongoing investment and collaboration; and adaptability. While each of these factors has areas for ongoing improvement, this case example demonstrates that co-creation and co-translation of research in Aboriginal health is achievable and, indeed, necessary to improve health outcomes.
In: Child abuse & neglect: the international journal ; official journal of the International Society for the Prevention of Child Abuse and Neglect, Volume 143, p. 106297
BackgroundWhile Aboriginal Australians are known to be disproportionately affected by intellectual disabilities (ID) and/or autism spectrum disorders (developmental disabilities), true prevalences among Aboriginal children are unclear, with evidence of delayed and missed diagnoses and barriers to services. This study estimated these prevalences and disability service use among WA Aboriginal children. ApproachTwo cohorts and data sources were used. Firstly, a state-based health and disability data linkage for all WA Aboriginal children born 2000-2013, including hospital, public outpatient mental health, birth and death data and state registries of birth defects, cerebral palsy and ID. The cumulative incidence of diagnosis by age 18 was estimated. Secondly, prevalence of service access was estimated from all National Disability Insurance Scheme (NDIS) WA Aboriginal and non-Aboriginal participants aged 0-17 on 30/6/2021 with a primary diagnosis of ID (with or without fetal alcohol spectrum disorder (FASD)) or autism. Census population counts were denominators. ResultsUsing the data linkage, 3.3% of Aboriginal children born 2000-2013 were diagnosed with developmental disability by 18 years. The most common diagnosis (2.5%) was ID without FASD. Using NDIS data, 3.1% of Aboriginal children were NDIS participants with development disability in 2021, but only 0.7% of children with ID without FASD. Instead, autism was most common diagnosis. Aboriginal children were more likely than non-Aboriginal children to be NDIS participants with autism (prevalence ratio (PR): 1.16, 95% confidence interval (CI): 1.06-1.26), ID without FASD (PR: 2.06, 95% CI: 1.80-2.35) and ID with FASD (PR: 40.5, 95%CI: 29.9-57.1). For both data sources, prevalences differed by region. Aboriginal NDIS participants with ID had an older age distribution than non-Aboriginal participants. ConclusionFor both cohorts, the prevalence of developmental disability was >3%, though the contributions of ID and autism differed in the two data sources. Variation in diagnoses by region and Aboriginal status may indicate differential diagnosis and variation in age suggests delayed diagnoses or access to services for Aboriginal children.
Australian government planning promotes evidence-based action as the overarching goal to achieving health equality for Aboriginal and Torres Strait Islander populations. However, an inequitable distribution of power and resources in the conduct of evidence-based practice produces a policy environment counterintuitive to this goal. This context of contemporary evidence-based practice gives legitimacy to 'expert practitioners' located in Australian governments and universities to use Western guidelines and tools, embedded in Western methodology, to make 'evidence' informed policy and programming decisions about Aboriginal and Torres Strait Islander populations. This method for decision making assumes a positional superiority that can marginalise the important perspectives, experiences and knowledge of Aboriginal Community Controlled Organisations and their processes for decision making. Here we consider the four steps of an evidence review: (1) developing a review question; (2) acquiring studies; (3) appraising the evidence and (4) assessing the evidence, as components of wider evidence-based practice. We discuss some of the limitations across each step that arise from the broader context within which the evidence review is produced. We propose that an ethical and just approach to evidence-based review can be achieved through a well-resourced Aboriginal community controlled sector, where Aboriginal organisations generate their own evidence and evidence is reviewed using methods and tools that privilege Aboriginal and Torres Strait Islander ways of knowing, doing and being.
