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.
The state of maternity care delivery and maternal health
Baseline data from record audits revealed ANC occurred frequently for Aboriginal women, in excess of recommended guidelines. It began late however, not within the recommendations of ANC in relation to trimesters of pregnancy. Records described poor quality of care and poor adherence to evidence based guidelines in several key areas e.g.: smoking cessation advice, treatment of anaemia, urinary tract infections (UTI) and sexually transmitted infections [16]. These factors are all associated with preterm birth, LBW and high hospitalisation rates of neonates. In our sample, one third of the neonates were admitted to neonatal intensive care, following birth [17].
Inappropriate resourcing of remote health services, poor co-ordination, lack of continuity of midwifery carer, as well as discriminatory attitudes and poor practices of clinicians influenced the delivery of ANC [20]. High levels of complications were common: 23% had antenatal hospital admissions, 50% of women were anaemic (Hb <11.0 g/dl), 45% had abnormal urine test results indicating UTI, 21% had preterm labour resulting in preterm birth, and 22% were recorded to have sexually transmitted infections [20].
Baseline data showed 10% of births occurred in the remote communities despite guidelines recommending all women be transferred for birth. Just over one-third (36%) of these were preterm births [20]. The first small ethnographic study identified women’s decision to birth locally rather then be transferred. This decision was influenced by their previous frightening experiences when giving birth in the RC, their assessment of risk in relation to their own health status and their responsibilities to other children [24].
Following birth, communication and handover of care from clinicians at the regional hospital to the staff of the remote health centres was inadequate. Observations and interviews showed discharge summaries were late or absent and many inaccuracies were identified [19]. Poor documentation, communication and co-ordination between hospital and health centre staff and a lack of clinical governance compromised the standard of care during the discharge and afterwards. After discharge, care was fragmented without qualified child and family health nurses working in a supportive role with parents. A participatory action sub-study led by a doctoral student with health service staff showed some improvements to the discharge process [18] with better coordination of communication.
By six months postpartum, 45% of women had documented postnatal morbidities such as anaemia (20%), UTI (8%) and reproductive tract infections including caesarean section wound infections (8%), and 8% required hospital admission. Most women accessed remote health services at least once, however few had documented postnatal care [16].
In response to these findings (and funding opportunities resulting from the Northern Territory Emergency Intervention) [28] the Midwifery Group Practice (MGP), a new model of care, was introduced.
The intervention: the midwifery group practice (MGP)
The MGP was staffed by midwives, Aboriginal Health Workers (AHWs), Aboriginal midwifery students and an Aboriginal ‘senior woman’. This became the main health service-led ‘intervention’ of the study, evaluated and reported elsewhere [29, 30]. Designated full- time midwifery positions in each of the communities were also introduced. Attempts were also made to improve infant care during this period, including increasing the staffing of ‘well baby’ services in both communities and introducing a training program that many nurses took ‘on-line’ to improve their knowledge in child health and development.
This intervention provided women from the two remote communities with continuity of care from a primary midwife, assigned at the time the women were in the RC hospital. Designated midwives (with no routine nursing duties) were also introduced in five remote communities, including the two field sites [31].
How did the MGP impact on maternal and infant health?
Significant improvements were made to health services including statistically significant improvements in maternal record keeping; ANC (fewer women had no ANC and more had >5 visits), antenatal screening tests and smoking cessation advice; a reduction in fetal distress in labour; and, a higher proportion of women received postnatal contraception advice [30].
The experiences of women, midwives and others during the establishment and the first year of the MGP also were reported positively [31]. Furthermore, women’s engagement with the health services through their midwives improved. Midwives in the RC were regularly receiving text messages reporting baby weights many weeks after birth. Quality of care was enhanced and a number of positive clinical outcomes were found. A cost consequence analysis showed cost savings were found as a result of significantly reduced birthing and neonatal nursery costs [29].
What did not change and why?
Our evaluation in 2012 [30] showed further improvement in clinical care is still needed. Some adverse health conditions appeared to increase, possibly due to improved documentation. A paper (in preparation) describes in more detail results than have so far been published from the report of the MGP evaluation [30].
Most contextual factors seemed to have been addressed by the introduction of the MGP. Appropriately qualified staff is now providing continuity of care. The reported absence of Aboriginal leadership is being better addressed through improved relationships between midwives and their clients.
The state of infant care delivery and infant health
By one year of age 59% of infants in baseline studies were admitted to hospital at least once with the rate of hospitalisation per infant year 1.1 (95% CI 0.9-1.2) [17]. At baseline, one-third of infants were admitted to the neonatal nursery at birth, predominantly for prematurity. Infants presented to the remote health centre on average 28 times by age one [17]. Half of these were for respiratory, skin and gastrointestinal symptoms with the remaining presentations for review or routine care. Sixty-eight percent of infants were anaemic before age one and 86% suffered growth faltering [21]. Clinical identification, management and treatment completion was poor for both growth faltering and anaemia in remote health centres [17].
Both health centres had high staff turnover and limited capacity to provide continuity of care between staff and parent [21]. Most staff had no formal qualifications in child and family health resulting in limited knowledge and skills in infant health and development. Furthermore they worked in poorly structured and fragmented services. Hospitalisation of neonates at birth was significantly higher than expected in the baseline data when compared to national figures (e.g. preterm birth <37 weeks; Baseline: 21% (2004–06) [16] vs 13.7% (Australian Aboriginal, 2006) and 5.1% (Australia non-Aboriginal 2006) [32]. Given the rate and acuity of presentations, along with our data on infants that had already been hospitalised as neonates and our epidemiological evidence on birth rates [26], staffing was clearly inadequate and compared poorly with the improved model of maternity care [18, 31].
Both communities demonstrated the impact of poor engagement with Aboriginal community leaders, community services, absence of AHWs and of Aboriginal leadership in the way services were designed, delivered or ‘owned’ by their local community. There was insufficient time for health promotion [21]. Qualitative analyses of the 2012 evaluation data showed no improvements in infant health service provision [30], however detailed analysis (unpublished) of quantitative and qualitative outcomes for infants is ongoing.
What factors might have influenced these findings?
Deficiencies in the quality and availability of data to inform decisions about the provision and delivery of services Epidemiological analyses of 2003–2005 NT perinatal data quantified inequalities between groups of Aboriginal women and newborns Aboriginal women and infants have worse outcomes if they live remotely, especially if they live in the Top End [6]. This sub-study confirmed existing evidence that the prevention of smoking during pregnancy and the delivery of high-quality ANC are needed to improve Aboriginal MIH outcomes. When different Aboriginal age cohorts were analysed, Aboriginal mothers < 20 years were more likely to have a normal birth than Aboriginal mothers aged 20–34 years.
We compared the numbers of births for our sites using community birth records, birth registrations and the midwives’ data collection [26]. Birth registration and perinatal data sets appear to underestimate birth counts when verified locally with community birth records. The range is notable at the local level (ten infants or more identified in both settings) and can lead to an underestimation of workload, resources needed and intensify already existing staffing pressures. Mobility of Aboriginal women (an integral part of Aboriginal life) plays an important part in the changes in population numbers and should be catered for in routinely collected NT data [26].
Discrimination and inadequate understanding about Aboriginal culture We explored the experiences and beliefs of families, in an ARC funded sub- study, as they cared for their infants between birth and their first birthday. Stories were collected about child rearing, development, health and well-being. This research showed major discordance between Western and Aboriginal views about children's agency and role within the family [15].
Unintentional discrimination and racism were also evident in our observations and interviews across the program of work in remote and regional centre fieldwork [23]. The invisibility of Aboriginal leadership seems to contribute to this [17]. The new MGP model appears to have reduced this to some degree with data suggesting a change in culture in the RC maternity wards; possibly due to the relationship-based advocacy role that was played by the midwives and Aboriginal workers in the new model [30].
Development of training opportunities and research capacity An additional goal of our work was to engage Aboriginal health workers and communities in research with a view to improving Aboriginal care delivery and health outcomes [13, 33]. Our program of work made an important contribution to the MIH workforce and development of research skills (See Table 1). Researchers undertaking doctoral or other research degrees conducted many of the sub-studies as they simultaneously developed research skills desirable for professionals living and or working with remote and Aboriginal populations.