Background
Health disparities between Aboriginal and non-Aboriginal women and infants are well established [
1] and exacerbated by remoteness [
2]. Despite a decline in Australian Aboriginal infant mortality, the rate is still twice that of non-Aboriginal infants [
1]. Twice as many Aboriginal infants are low birth weight (LBW) (≤ 2500 g) and a greater proportion are born preterm when compared with non-Aboriginal infants [
1].
Remote Health Centre (RHC) attendance in the Northern Territory (NT) of Australia by remote-dwelling Aboriginal infants in the first year of life is high, with presentations predominantly for respiratory, skin and gastrointestinal symptoms [
3]. These infants also have a high hospitalisation rate in their first year of life [
3]. Malnutrition, anaemia and acute illness are widespread in this population, starting early, and persisting throughout the first year of life [
4].
Strong evidence links events in a child’s early years with adult health and wellbeing [
5,
6]. Targeted interventions and culturally appropriate high-quality health care in the early years can reduce rates of complex chronic disease from infancy through to adulthood [
7,
8], particularly in disadvantaged populations [
9].
Most Australians can access well-established ‘well-child’ health programs, with child health and developmental checks provided by qualified child and family health nurses (CFHNs)
1 These are registered nurses and/or midwives with additional postgraduate qualifications and experience in child and family health nursing who ‘promote child development, maternal and family capacity, and provide services for both primary and secondary prevention of physical and psychosocial issues’ [
10] [p200].
‘Well-child’ and family checks are provided via a schedule of regular contacts with children between the ages of 0–5 years that correspond with critical developmental stages [
11]. Targeted interventions are offered to children and families with identified needs to actively manage concerns promptly and circumvent the need for further referral [
11]. Although a ‘well-child’ health service has been available in Australia for over 100 years [
10], this service, promoted and provided by qualified staff, is not routinely available to remote dwelling infants.
The 1 + 1 = A Healthy Start to Life Study was a five year (2007–2012) mixed-methods study using participatory action research (PAR) approaches and funded by the Australian National Health and Medical Research Council and Australian Research Council. The study was developed in response to concerns expressed by Aboriginal women, policy makers and clinicians about the quality of maternal and infant health services in the Top End (TE) of the NT [
12] and previously documented in NT publications and reports [
13‐
15]. Each sub-study within the Healthy Start to Life study was conceived, planned, conducted and reported with the primary aim of service improvement [
16] and several focused on infants [
3,
4,
17]. The infant sub-studies provided a snapshot of the overall quality of health service delivery prior to infant service reforms [
16].
The Northern Territory infant health service reforms
Data from the Healthy Start to Life investigations into maternal and infant health (MIH) care were presented to Department of Health (DoH) leaders, policy makers and clinicians in 2008/2009. A number of reforms to the remote-dwelling infant health service were subsequently undertaken. Some of these reforms occurred following the data feedback, and others were independent of the research. These reforms included; implementation of the Healthy Under 5 Kids (HU5K) program and an education package to support staff to deliver this program. Designated CFHN and Aboriginal Community Worker (ACW) positions were also established in the two Healthy Start to life study sites.
Healthy under 5 kids program
The new HU5K Program, introduced in 2009, aimed to shift the focus of primary health care delivery to the 0-5 year old population from what had been selective primary health care to a comprehensive primary health care model [
18].This program extended the DoH Growth Assessment and Action Program, the previous mechanism for detecting anaemia and child growth and interventions for growth faltering [
18]. The HU5K program encompassed age-specific child health surveillance, including growth assessment and childhood vaccinations [
19]. The six visits scheduled between birth and twelve months of age were designed to be opportunities for health promotion and education. The assessments at different growth stages focused on; bonding and attachment, response to caregiver concerns, developmental milestones, living conditions, nutrition and the introduction of solids [
19].
The Healthy under 5 kids education package
In 2009 an education package was jointly developed by the DoH and the regional university to support delivery of the HU5K program. Targeting RHC staff without formal CFHN qualifications, the package comprised eight modules incorporating: primary health care, child development and assessment tools, physical and cognitive aspects of growth and development, social and emotional development, psychosocial aspects of parenting, working in partnership with parents, brief intervention and the HU5K schedule [
20]. This stand-alone, self-directed education package took approximately 20 h to complete and upon completion, doctors and nurses who completed the package were eligible for credit towards tertiary education programs. Completion of the package was not a pre-requisite for staff working with infants, although these staff were strongly encouraged and supported to do it.
Child and family health nurse and Aboriginal community worker positions
In 2010 four designated fulltime equivalent (FTE) CFHN positions were established in the two study sites (two FTE in each community) and two part-time ACW positions (one position in each community). The ACW position is a non-clinical role, undertaking health promotion, cultural brokerage and community development [
21] to complement the role of clinicians in RHCs. The ACW (child health) position was established to carry out the above functions, and work in partnership with the CFHNs, to increase awareness of the importance of the early years and promote the HU5K program.
The aim of this paper is to report the qualitative findings of a sub-study exploring the quality of service provision to remote-dwelling Aboriginal infants, from a clinician’s perspective, after the above reforms were instigated. Quantitative findings will be reported elsewhere.
Setting
Of the NT’s population of 244,000 people [
22], 30% are estimated to be Aboriginal and Torres Strait Islander [
23] with one quarter (27%) of the Aboriginal population living in remote or very remote locations [
24]. Children under 15 years of age comprise one-fifth of Australia’s total population and the NT has the highest proportion of children (23%). One quarter (26%) of these dwell in ‘outback areas’ [
25].
The study sites were the RHCs in two remotely located Aboriginal communities, A and B (populations between 2000 and 2500). The communities are situated 500 km in opposite directions from the regional centre; the location of the major referral hospital.
At the time of the study the RHCs were open during business hours with staff rostered ‘on call’ for after-hours presentations. Care was provided by doctors, remote area nurses (RANs) who may also be registered midwives, remote area midwives, Aboriginal Health Workers (AHWs) and ACWs. Unlike ACWs who assume a non-clinical role, AHWs primarily assume a clinical role and other responsibilities as required, including administration, clinical, health promotion and education. Like ACWs, they are also cultural brokers providing a link between traditional and Western beliefs [
26].
Despite available funding for two CFHNs in each community, and attempts to employ qualified CFHNs, recruitment and retention to these positions proved difficult. No dedicated CFHNs had been employed. Community A had employed a registered nurse/midwife, who was undertaking her post-graduate CFHN qualifications, on a fly in fly out basis, three days per week. She left after seven months for personal reasons and was not replaced during the data collection period. Community B recruited a qualified CFHN who resigned after six weeks. The reasons for her departure were unclear and she was unavailable for interview. This position had not been recruited to during the data collection period, although a RAN with CFHN qualifications worked a month on month off roster. A CFHN, based in the regional centre, visited the community for 2–3 days each fortnight to provide a well-child health program outside of the RHC. No ACWs were employed to work in partnership with the CFHNs in either community during the data collection period.
Recruitment and retention issues pertained to; a lack of community staff housing, absence of clinical governance to support the CFHN roles, poor management and collegial support and discord regarding expectations of the CFHN (well-child) role compared with a ‘paediatric’ nursing (ill child) role.
Situated within the RHC and staffed by one or two RANs were rooms assigned to the 0–5 years population commonly called ‘baby-rooms’. These rooms contained all the equipment required for working with infants, for example measuring mats, infant scales, immunisation fridge etc. Health promotion posters aimed at Aboriginal parents and infants targeting eye health, nutrition and hygiene, for example, were displayed. There were also child-friendly murals, mobiles and pictures using both western and Aboriginal imagery. While the baby-rooms were similar in both RHCs, the organisation and delivery of infant health services differed slightly, as described below.
In RHC A, one RAN worked in the baby-room solely to provide follow-up for infants with growth faltering and anaemia. As well as being on-call for general (not just paediatric) after-hours presentations, this RAN held other considerable responsibilities in the RHC, for example ordering pharmacy, palliative care or mental health and consequently was often unavailable to work in the ‘baby-room’. The ‘well-child’ program and immunisations were completed one day per week by a GP paediatrician and another RAN. Acute infant care was provided by other RHC clinicians as required.
In RHC B two RANs worked in the baby-room and every child who presented at this RHC was directed to the baby-room. As such, these RANs were expected to complete the ‘well-child’ program, immunisations, and provide acute care. These two RANs also worked on call for general after-hours presentations and were allocated other RHC portfolios. Like their counterpart in RHC A they were subsequently not always available to work in the baby-room.
Both study sites used an electronic health record system (EHR). While this EHR interfaced with other electronic databases, for example the NT Childhood Immunisation Register and the NT Rheumatic Heart Disease Register, it did not always interface with EHR systems used in non-DoH communities [
27]. All RHC staff were expected to follow treatment guidelines developed and endorsed by the NT DoH
2 [
28]. For example, prompts were generated for the well-child program within the EHR. Infants with abnormal findings e.g. anaemia and growth faltering requiring specific treatment and follow-up were meant to be commenced on ‘action plans’ generated by clinicians as needed.
Paediatricians visited each community monthly. Qualified CFHNs from the regional centre provided an outreach service and visited every four to six weeks to provide support and guidance to the RANs who were commonly without child health qualifications [
29]. These CFHNs advised on growth and development, immunisations and health promoting activities for infants and their families. They did not directly deliver services.
Discussion
This study investigated the quality of services provided to remote-dwelling Aboriginal infants, from the clinicians’ perspective, and as observed by the researcher, following the launch of three initiatives designed to reform health services for remote dwelling infants. These were: 1) the redeveloped well-child health program, 2) an education package supporting the program and 3) establishment of dedicated CFHN and ACW positions in the two study sites.
A range of factors affecting the quality of care, identified before these initiatives were instigated remained problematic. These factors included ineffective service delivery, inadequate staffing and culturally unsafe practices [
3,
4,
17,
39,
40]. The six themes identified and described in this paper illustrate how these factors persist and when combined portray a
‘very chaotic system’.
Poor information transfer between the regional hospital and RHC, and consequent unsafe and inadequate care has been previously reported in this population [
4]. Informed by our earlier research, the DoH attempted to improve the maternal discharge summary process. Improvement measures included: redesigning discharge paperwork, nomination of a designated health professional at the RHC to receive summaries and allocate them to the appropriate clinician, hospital staff training in the computer program that generated discharge summaries, and the development of a length of stay and discharge policy [
39,
41]. However, numerous examples of compromised patient safety within the infant health system still occurred and were identified by participants. Issues with computer generated discharge summaries [
42] were evident in the subsequent sub-study, described here, particularly the timely transfer and accuracy of information. The impact of inadequate discharge information processes on quality of care and patient safety has previously been described [
43].
A persistent problem for remote living Aboriginal infants [
44,
45], documented previously in the study sites [
3] is the high prevalence of growth faltering and anaemia. We found that some staff appeared to accept anaemia and growth faltering in this population as a ‘normal’ part of child growth and development. A potential explanation for the acceptance of these conditions as normal and subsequent failure to initiate treatment, is clinical inertia (CI).
Clinical Inertia has been defined as a failure to start or intensify treatment [
46]. Widely recognised as a key factor in the poor management of chronic disease by clinicians [
46‐
48] the three main contributing causes for CI were identified in our study. Clinician factors include poor knowledge and training while patient factors involve distrust of the clinician and poor communication between clinician and patient [
48]. Health system factors include a lack of guidelines and poor staff communication [
48]. Insufficient knowledge and training was acknowledged by participants who described themselves and some of their colleagues as ill prepared for the CFHN role. While guidelines did exist, clinician’s failure to follow these was identified in our earlier research [
4] and despite improvement efforts at both the RHC and systems level, continued to be an issue in this study. A possible explanation for the continued poor adherence to guidelines across both studies may be staff ‘burnout’.
Burnout is a syndrome of emotional exhaustion, depersonalisation and reduced personal accomplishment, which can occur among individuals who work with people [
49]. Increased levels of employee stress and burnout [
50] foster workplace disengagement and an inability to meet work demands, negatively effecting health care quality [
50]. Data collection for this study did not measure burnout. However, the RAN workforce reports significantly higher emotional exhaustion than other nursing samples [
50] and is a key reason RANs leave their positions [
51].
A contributing factor to potential burnout in our study was the unrealistic responsibilities and demands placed on largely unqualified and untrained staff who, without the requisite skills, were expected to deliver the well-child program. The effect of this was demonstrated by the obvious distress of participants recounting their experiences working in the baby-rooms.
Despite one-third of all RHC presentations being for child health and non-acute interventions [
3], participants reported an overwhelming focus by staff on acute service provision, at the expense of primary health care programs. The detrimental outcomes on care quality when clinicians working in RHCs experience burnout including, inadequate monitoring and management of chronic conditions and failure to provide preventative health programs have been reported elsewhere [
52].
Possible explanations for an acute care focus may also be an emphasis in undergraduate nursing curricula on acute care and limited exposure to, and understanding of primary health care practice and child and family health nursing [
53]. As well, participants acknowledged that their postgraduate experience was in more acute areas such as intensive care or emergency nursing.
Dissatisfaction with management practices by RHC managers has previously been reported [
51]. Clinicians expressed disappointment
‘at the mediocre management skills which lead to some staff refusing to actually cover areas outlined in business plans’ [
51] [p 114] [
54]. In our data this was exemplified by participant descriptions of the actions of a RHC manager, employed prior to data collection, who attempted to incorporate the well-child program into general RHC functions because so few staff expressed interest with working in the baby-room, rather than prioritise the program and recruit and stabilise the workforce. This directly contrasts with a key recommendation for Aboriginal child health that:
“Workforce requirements to provide appropriate services for these children must be prioritised so that the gap in services between them and other children is minimised, not exacerbated” [
55].
The United Nations recognises the rights of children ‘to the highest attainable standard of health’ [
54] with an emphasis on primary health care, child health and preventative health care [
54]. However, the well-child health program available to the wider Australian population is not offered in remote communities. Systems need to be found to ensure that children in remote areas receive child health visits, as they stand to derive the greatest benefit from child health services’ [
55] [p218]. However the inverse care law, predominant within health systems operates in the two study sites, whereby those who need care most are less likely to get it [
56]. The child health education package was developed to train the existing workforce to provide a well-child health program, in the absence of qualified staff. While there is support for this approach, it creates an uneasy tension as the use of an unskilled workforce undermines the efficacy of preventative child health programs [
55] and a compelling argument that the infant population with the greater disease burden is given an inferior service. The damaging effects of inadequate nurse preparation for preventative health programs is well known [
29,
52,
53,
57]. and was recognised by study participants. Preventative health programs are supplanted by acute care demands while follow up care and management is not given and community members, for whom the service is provided, become disengaged [
57]. The use of an unskilled workforce to deliver a well-child health program is in contrast to most Australian jurisdictions which require CFHNs to hold postgraduate qualifications [
10,
58].
The disengagement with health services by community members as a direct result of staff turnover is recognised [
57]. Staff attrition and rotation through the RHC baby-rooms was highlighted by participants as a major contributing factor to poor continuity of care and service quality. Participants described it as almost impossible to build trust and develop relationships with infants and their families, considered key to effective child and family health practice [
59] and to reducing emergency presentations [
60]. This finding contrasts with results from the evaluation data of a midwifery continuity of care model introduced in the regional centre in 2009. The launch of the Midwifery Group Practice by the DoH, linked Aboriginal women transferring to the regional centre at any time throughout their pregnancy and for birth with a known midwife. This resulted in improved health system engagement [
61]. However, a service evaluation found that it was in the RHC where care was more often likely to be suboptimal [
62].
Indigenous involvement in health service delivery is key to its uptake by Aboriginal people [
63] and the ability to address racism in health services. Yet Indigenous people comprise only 1% of the Australian Health Workforce [
64]. This corresponds with Indigenous workforce figures in other developed nations [
65]. Lack of support for Aboriginal staff due to high staff attrition and limited appreciation of the importance of the role of Aboriginal staff has been documented previously [
66,
67]. However, it fails to explain why no ACWs were recruited to work alongside CFHNs despite available funding. While Aboriginal staff are considered essential to improving service accessibility and acceptability in MIH care [
68], this study found no Aboriginal staff working within child health in the two study sites. The marginalisation or lack of Aboriginal health staff silences Aboriginal voices and contributes to their invisibility allowing both conscious and unconscious racism to permeate [
69]. Similar findings have been described in the Australian Public Service [
70].
Racism is a key determinant of health for Indigenous people [
2,
71] and the experience of racism by Aboriginal people can contribute to poorer health outcomes [
72]. Racist attitudes and practices by clinicians are described in the literature [
69,
72,
73] and were observed in this sub-study. Studies have shown that where their caregivers are exposed to racism, infants are likely to experience more common child health illnesses and poorer social and emotional wellbeing outcomes [
74]. Some staff seem to lack insight into the fact that their behaviours are contributing to the problem and continued disadvantage of Aboriginal clients [
69]. For example, in this study caregivers were alienated by staff in the way they were spoken to and treated to such a degree that some staff believed that it affected their RHC attendance and return for follow up treatment. These findings are consistent with the unsafe and distressing experiences of Aboriginal people engaging with the broader NT health system [
75].
An area requiring urgent reform in closing the gap in Indigenous health outcomes is the development of a culturally competent workforce [
76]. The characteristics of such a workforce have been described elsewhere [
11]. While the NT DoH has instituted a cultural security framework [
77] there needs to be a rigorous examination of the implementation of this by the DoH [
3] to determine if current practices are supporting or hindering Aboriginal health and wellbeing [
69]. This may necessitate the development of tools to measure culturally competent care [
11].
Limitations
This study is limited by the relatively brief periods of participant observation, thirty hours in both communities, and the small number of participants. A further limitation is that the findings may be non-generalizable as the study took place in two communities only, however similar problems are reported elsewhere [
44,
78‐
80]. The study is strengthened by using the same methods and methodology as our previously published study [
3].