The quality of health research for young Indigenous Australians: systematic review

There are major incentives to invest in the health of Aboriginals and Torres Strait Islanders who are adolescent or young (used interchangeably throughout this article to refer to 10–24-year-olds).1 An estimated 31.7% of Indigenous Australians were aged 10–24 years in 2006, compared with 20.4% of the non-Indigenous population,2 and they experience an excess burden of preventable and treatable disease at a life stage when opportunities for education, employment, reproduction and independent living are at their peak.3 Births to Indigenous teenagers represent about one-fifth of all births to Australian Indigenous women;4 Indigenous young people have high rates of risk factors for the development of non-communicable diseases in adulthood (eg, obesity, tobacco-related disease);3 and the mortality gap between Indigenous and non-Indigenous Australians widens during adolescence and persists into adulthood.5-7 Indeed, improving young people’s health would appear to be critical to the success of the government’s National Indigenous Reform Agreement,8 particularly with regard to life expectancy, reading, writing and numeracy, secondary school completion and employment attainment.9

Indigenous young people’s health is a critical target for health system reform; however, the evidence base to inform health policy and the provision of programs to respond to specific needs remains poorly described.3,10 Measuring young people’s health is complicated by a lack of agreed indicators, and the problem is compounded by the publication of adolescent health data throughout the diverse paediatric and adult literature.11 Significant deficits of Indigenous health research have also been described.12-14 However, specific research policy reform by the National Health and Medical Research Council (NHMRC) has provided guidance for improved quality of Indigenous health research,15,16 and there was an increase in the quantity of Australian Indigenous health research during 1987–2003.17

The overarching aim of our project was to establish the health status of young Indigenous Australians and identify opportunities to improve their health outcomes. The starting point was to systematically document the existing good-quality literature and the limitations of this evidence base, which we describe here. A synthesis of health outcomes and effective interventions for young Indigenous Australians is forthcoming.

We systematically searched the literature from 1 Jan 1994 – 1 Jan 2011 for peer-reviewed studies reporting health data for Indigenous Australians aged 10–24 years, identifying both descriptive data and evaluations of health interventions.17 We included studies that exclusively reported data for Indigenous young people, as well as those reporting disaggregated data (ie, studies sampling Indigenous Australians and reporting data for young people, or studies sampling young people and reporting data for Indigenous Australians). Our review process is outlined in Box 1. Appendix 1a provides details of our search strategy and inclusion criteria.

Our search strategy identified 3788 citations; 1509 full texts were reviewed, and we identified 360 peer-reviewed studies reporting data for young Indigenous Australians (Box 1). Ninety studies (25.0%) exclusively sampled Indigenous young people. Two-hundred and two studies (56.1%) were prospective in design. Studies were mostly descriptive (306 [85.0%]) and included 14 case series, 37 qualitative studies, 93 surveillance studies, 149 cross-sectional studies, 4 case–control studies and 9 cohort studies. Ninety-three of the 306 descriptive studies (30.4%) reported a determinant. Of the 54 evaluation studies, 34 (63.0%) were quantitative in design and there were no randomised trials. The number of studies published increased over time. The proportion focusing exclusively on Indigenous young people and the proportion with prospective study design increased significantly (P = 0.04 and P = 0.03, respectively) (Box 2). While the number of studies evaluating interventions also increased during 1994–2010, the proportion of all studies that were evaluative in design did not change (P = 0.56).

Most health-outcome data for Indigenous young people published during 1994–2010 focused on communicable diseases, oral health and substance use. There were also some good-quality data for health-risk exposures related to adult non-communicable diseases (such as substance use, physical activity and diet) and for adolescent pregnancy, including some data on perinatal outcomes. These data illustrate how the health of today’s Indigenous young people will affect the health of Indigenous Australian adults and their children in the years to come. The quality of data improved over time, but there were still some important gaps. Data for urban locations were limited, as were data for mental disorders and injury. Data on the health of adolescent mothers were limited, despite fertility peaking in this age group.4 Mortality data were not available for all jurisdictions of Australia, and cause-specific estimates were limited. Overall, there was also a paucity of evaluation of programs and interventions. Identification of these gaps may assist in considering future research needs.

It is important not to interpret these findings as over-investment of research in some health areas. For example, sexually transmitted infection causes a disproportionate burden of poor health among Indigenous young people,38 and relevant good-quality data are likely to have informed the national strategy prioritising control of sexually transmitted infections among Indigenous Australians, particularly young people.39

We mapped the focus of studies using the burden of disease framework because using a predefined schedule of health outcome and risk allowed for objective assessment of any data gaps. It is not possible, however, to directly compare the scope of these publications to estimates of the burden of disease among Indigenous young people. Age-disaggregated data allowing calculation of disease burden for 10–24-year-olds were not available.6 Furthermore, estimates reported in the Australian Indigenous burden of disease study are dependent on quality input data, largely missing for Indigenous people living in urban settings13 and in areas such as mental health.40 With these limitations in mind, mental disorders and injury together account for 56% of the burden of disease among Indigenous people aged 15–34 years (calculated from annex tables).6 This proportion is similar for mental disorders and injury in young people aged 10–24 years globally.41 Burden of disease, however, is only one marker of research priority; priorities identified by Indigenous young people and their communities are a fundamental consideration. For example, a qualitative study of Indigenous adolescents in a remote area identified substance use, violence, boredom and racism as significant issues.25 Placing the findings of our study in this context, there appears to be a mismatch between estimates of the burden of disease, needs reported by young people, and the focus of research studies in Indigenous young people. The potential for implementing effective (and cost-effective) prevention and intervention is an additional consideration.42

The findings of our study are similar to a review of Canadian Indigenous health research that found research was primarily focused on health conditions amenable to “curative services”.43 One possible explanation is that competitive research funding and policy (such as Closing the Gap) encourages investment in health targets that are easily measured and amenable to simple intervention: this is a well recognised challenge of global health policy where there has been acceptable progress towards goals targeting individuals (ie, child survival), while goals such as gender equality and maternal health (shaped by socioeconomic and cultural determinants) have lagged.44,45 Despite social determinants playing a central role in Indigenous health inequality,8 we identified few studies that focused on social exclusion or socioeconomic inequality (justice, education, employment or housing). Less than a third of descriptive studies measured a determinant.

Three-quarters of all young Indigenous people live in urban and regional areas.3 Despite this, overall investment in research involving this population was limited, although it is improving. Challenges of conducting urban Indigenous health research are distinct from the cost and methodological challenges of rural research.46 There are no geographical boundaries or readily identifiable target populations that allow identification of Indigenous Australians living in urban settings.13 Appropriate consultation and collaboration (essential principles of Indigenous health research) in this context may involve a large number of communities and organisations and requires time, flexibility, and resourcing,47-50 which are increasingly at odds with research grants that focus on timely outputs. Developing a robust evidence base may also require non-standard approaches. While Indigenous health research is often conducted in collaboration with Aboriginal community-controlled health services or Aboriginal medical services,13 the Western Australian Aboriginal Child Health Survey showed that only 12% of Indigenous 12–17-year-olds had contact with an Aboriginal medical service in the preceding 6 months, with contact lowest among those living in the most urbanised settings.51 Data linkage may provide one mechanism to better understand patterns of health and social service access.

Health needs and opportunities for intervention vary significantly across the 10–24-years age band. We did not disaggregate our analysis by age subgroup because almost two-thirds of studies included multiple age subgroups. Additionally, we only included peer-reviewed literature; the grey literature may fill some of the identified gaps. The Western Australian Aboriginal Child Health Survey, for example, is published in four volumes and includes mental health data for 12–17-year-olds.52

The findings of our study serve two main purposes. First, we have identified some good-quality literature that can be used to inform health policy and programs to improve the health of young Indigenous Australians; a synthesis of this literature is forthcoming. Second, the findings provide a framework to allow Indigenous communities, researchers, funding bodies and the NHMRC to consider priorities for future research. Marriage of health research to need can only occur with consultation, engagement and the trust of Indigenous communities. This is essential for priority setting, dealing with sensitive health issues (such as mental health, injury and sexual and reproductive health) and appropriately and sustainably engaging young Indigenous Australians in understanding and addressing their health needs.53

1 Systematic review process

ERIC = Education Resources Information Center. CINAHL = Cumulative Index to Nursing and Allied Health Literature. ATSIhealth = Aboriginal and Torres Strait Islander Health Bibliography. * These were sorted by study design and include publications that did not sample Indigenous young people.

2 Frequency of publication and quality of data for young Indigenous Australians over time, 1994–2010

3 Sampling of young Indigenous Australians compared with the population distribution of all Indigenous Australians*

ACT = Australian Capital Territory. NSW = New South Wales. NT = Northern Territory. QLD = Queensland. SA = South Australia. TAS = Tasmania. VIC = Victoria. WA = Western Australia. * The graph shows the population distribution of Indigenous Australians, one dot representing 100 Indigenous Australians.2,19 Each red dot represents a single sampling site for a study (studies reporting sampling from five distinct sites are indicated by five individual dots; studies reporting sample location at a state or nation level are represented separately by a numeral).

4 Tree map plots* of 124 good-quality published studies on health outcomes among Australian Indigenous young people aged 10–24 years, colour-coded by Burden of Disease Framework category

M = musculoskeletal. Ca = malignancy. GIT = gastrointestinal. ME = meningoencephalitis. STI = sexually transmitted infection. TB = tuberculosis. * Plots are drawn to scale to demonstrate the proportion of descriptive to evaluative studies.

5 Studies of health-risk exposure focusing on 11 key risk factors