Improving Aboriginal maternal and infant health services in the ‘Top End’ of Australia; synthesis of the findings of a health services research program aimed at engaging stakeholders, developing research capacity and embedding change

Just over 500,000 Aboriginal and Torres Strait Islander people (hereafter referred to as Aboriginal) live in Australia today comprising fewer than three per cent of the Australian population [1]. Although many Aboriginal Australians have a good standard of living, too many remote living people experience unacceptable levels of disadvantage in living standards, life expectancy, education, health and employment [1]. Current data shows a wide ‘gap’ between the Australian Aboriginal and non- Aboriginal populations. Australia has committed to ‘Closing the Gap’ between Aboriginal and other Australians [2]. Maternal and infant health (MIH) is a particular area of concern with the perinatal mortality rate of Aboriginal infants 50% higher than for non-Aboriginal infants [3]. Similarly, rates of preterm birth and low birth weight (LBW) Aboriginal babies are nearly double those of non- Aboriginal Australians, signifying the need for serious and costly health care in the short-term, and foreshadowing long-term health problems, particularly in relation to chronic diseases [4]. Early antenatal care (ANC) and delivery of smoking cessation programs are linked to improved outcomes and are both significantly lower for Aboriginal women [2]. For all Australians, MIH outcomes worsen with increasing remoteness [5, 6] where providing services is more challenging [2]. A greater proportion of Aboriginal births occur to women living in areas considered remote or very remote – 26% compared to two per cent of non- Aboriginal births [7]. Also, in the context of overall perinatal disadvantage for Aboriginal mothers, remoteness is associated with poorer infant outcomes [8].

This paper synthesises the findings of a program of linked concurrent research projects funded by the Australian National Health and Medical Research Council (NHRMC) and the Australian Research Council (ARC). These projects all shared a common goal which was to: 1) provide evidence to influence policy and service design; 2) contribute to sustained improvement though translation of the research and, by so doing; 3) improve the quality of health care for this population group [9]. A subsidiary goal (4) was to improve capacity through research training in a region where this had been limited.

Both funded studies were conducted in the same two remote communities of the Northern Territory (NT). Eighty percent of the NT Aboriginal population lives remotely [10] and two-thirds of Aboriginal births originate from these remote settings [11].

The synthesis of the two NHMRC and ARC projects as one program of work answers the overarching question: ‘How can we improve MIH services for remote-dwelling Aboriginal women and their infants?’

In all of our studies, we prioritised Aboriginal ethics [12] and principles [13] within the research. Where relevant, community leadership was provided by Aboriginal co-researchers. Ethical approval was obtained from the Human Research Ethics Committee of the Northern Territory Department of Health and the Menzies School of Health Research.

These sub- studies provide an overall picture of the standard of maternity or infant care delivery. They describe women’s experiences with services and cultural practices in relation to parenting, and identify systemic barriers to quality and non-adherence to evidence based guidelines. The studies additionally identified local indicators [25–27] (based on routine data sources and our baseline data) that could more precisely inform the measurement of performance.

This paper describes MIH care at two different points in time and reports the results of a collaborative health service redesign and a program of research aimed at health system reform. Researchers have worked alongside the NT Department of Health as they have developed policies and led reforms. The partnership between the research team and the Department of Health enabled evidence-informed improvements to health service delivery to be made. Our response to industry partners is exemplified by the latest sub-study conducted at the request of a leading NT clinician into the reasons for neonatal admissions to the nursery to benchmark and compare these nationally and clarify that these high rates of admission were all necessary (paper under review). Further publication and analysis of services conducted in the final year, with a focus on evaluation of improvements, is in train. Some reform has been successful, such as changes to models of maternity care showing positive outcomes [30], however improvements to infant care are urgently required.

Our program of work has identified continuing problems with infant service delivery that should be addressed at the institutional level. Practices such as adhering to evidence-based guidelines, attaining accurate enumeration of births for remote areas and organising staffing and skills around known workload and morbidity levels need to be implemented. The sub-study of service utilisation observed that one-third of neonates from the communities were admitted to the special care nursery [17] at rate more than twice the national average [3]. Aboriginal infants are already compromised at birth with a birth weight nearly 186 g less than other Australian babies [3], more so if the mother smokes (nearly 250 g lighter) [34]. The qualifications required of staff working in this area must be addressed institutionally as almost all nurses working with infants and children were insufficiently prepared to work in this specialised area [21]. Improvement is also needed to the organisation and delivery of infant and child health care with a more supportive and continuous relationship with parents a priority.

It seems that teenage pregnancy is common in the NT, however problems usually associated with Aboriginal teenage births (such as LBW) are not due to maternal age, but rather related to the underlying poor health, socioeconomic disadvantage and a system that is challenged to support these young women, both culturally and medically. There is a need to use specific indicators, drawn from routinely collected data and our research, to inform and more accurately reflect the performance of health services and Aboriginal health status in this setting [25–27].

Our remote fieldwork identified a service that is dominated by acute presentations, rather than a community-engaged primary health system that promotes community, family health and well-being. Health system deficiencies in knowledge, recognition and support of local culture and child-raising need remedying to allow staff to be effective in promoting health and building resilience with parents of vulnerable infants [15]. Reforms to service design such as extending the continuity of care model now employed by designated midwives and the MGP into child health would enable staff to work alongside women and families. Similarly, respectful informed relationships with community leaders, focused on parenting and working together, could address the seriously inequitable outcomes of Aboriginal infants.

Coordination of care between remote and regional services, particularly information sharing and communication, remained poor but is improving with the use of electronic information systems relatively recently introduced. Further improvement could occur by making MGP midwives responsible for discharge summaries with phone handovers (prior to discharge) to the care provider in the community. Computer based information systems for MIH could monitor adherence to clinical guidelines centrally, highlight abnormal health findings and encourage appropriate responses from remotely located care providers. This is particularly important in infant care and child health where staff lack formal knowledge and skills considered essential for employment in other areas of Australia.

Funding of current services is an additional challenge. There are very few universal health care payments or Medicare reimbursement items that the NT government can claim against to gain refunds from the federal government for providing these services. In addition there are very few private practitioners working in remote Australia who can generate additional Medicare revenue [35]. Eligible midwives, who can claim against the national insurance system, are also currently underutilised in remote areas and, as with general practice, the relative numbers of uninsured and poor clients make a private practice model problematic except in very large remote communities.

This program of health services-oriented research identified serious deficiencies in the quality of MIH services for Aboriginal families living in remote communities in the Top End of Australia. Significant improvements were achieved. This has occurred through the engagement and support of Aboriginal women, policy makers, clinicians and managers who participated throughout the program of work and who are still working with our findings. Translation is still occurring.

The introduction of designated midwives and implementation of the MGP has resulted in improved clinical effectiveness and quality of care. This appears to be a sustainable, cost-effective model that should be rolled out to all women relocating for birth [29]. With one-third of Aboriginal and Torres Strait Islander birthing women living in remote Australia this strategy could be a significant contribution to ‘closing the gap’. In order to address the ongoing pattern of substandard care for infants and rates of preventable adverse infant health outcomes, more work is needed by health services, particularly in terms of targeting system redesign and the existing level of skills. This requires a commitment to address these issues at the institutional and service delivery levels by staffing according to volume of need, and providing staff with the skills necessary to conduct the work. Importantly, these reforms should be conducted in a system designed to engage Aboriginal leaders in a primary health and ‘well-being’ oriented model of care.