Office for Aboriginal and Torres Strait Islander Health Department of Health and Ageing FAMILY CENTRED PRIMARY HEALTH CARE THINK CHANGE In association with JTAI Pty Ltd Submitted by Robert Griew, Director Robert Griew Pty Ltd, trading as Robert Griew Consulting PO Box 433, Waverley NSW 2024 The Charing Cross Centre 199 Bronte Road, Waverley NSW 2024 T: 02 9389 1779 F: 02 9389 3779 E: info@robertgriew.com I am not yet born; provide me With water to dandle me, grass to grow for me, trees to talk to me, sky to sing to me, birds and a white light in the back of my mind to guide me. From Prayer before Birth by Louis MacNeice FAMILY CENTRED PRIMARY HEALTH CARE Review of evidence and models funded by the Office for Aboriginal and Torres Strait Islander Health Department of Health and Ageing, Canberra Robert Griew Consulting Associate Professor Robert Griew Mr Edward Tilton Ms Jess Stewart With Professor Sandra Eades Associate Professor Tess Lea Ms Carol Peltola And JTAI Pty Ltd Ms Louise Livingstone Ms Karen Harmon Ms Zoe Dawkins November 2007 This paper has been funded by the Office for Aboriginal and Torres Strait Islander Health, Department of Health and Ageing. The views in the paper do not necessarily represent those of the Australian Government. Table of Contents 1. Introduction ................................................................................... 6 TU UT TU UT The social determinants of health.................................................................................. 7 TU UT Beginning a healthy life - a best buy among the social determinants?.......................... 8 TU UT Health, education and welfare perspectives on child development ............................. 12 TU UT The Indigenous family context ..................................................................................... 13 TU UT Family-centred primary health care: towards a definition ............................................ 15 TU UT Methodology ................................................................................................................ 15 TU UT Outline of report ........................................................................................................... 17 TU UT 2. Maternal and child health ............................................................ 19 TU UT TU UT A summary of the evidence ......................................................................................... 20 TU UT The Health of Indigenous Women and Children ...................................................... 20 TU UT Intervention points for maternal and child health ......................................................... 21 TU UT Interventions primarily focused on women before and during pregnancy................ 21 TU UT Interventions primarily focused on the child after birth............................................. 25 TU UT Home visiting programs ........................................................................................... 27 TU UT Models in Aboriginal and Torres Strait Islander maternal and child health ................. 28 TU UT Principles for success .............................................................................................. 31 TU UT 3. Education and Health ................................................................. 34 TU UT TU UT A Summary of the Evidence ........................................................................................ 34 TU UT The relationship between health and education ...................................................... 34 TU UT The Australian Indigenous context........................................................................... 36 TU UT Intervention points for education and health................................................................ 39 TU UT Key features of interventions to enhance education outcomes ............................... 39 TU UT Opportunities for a direct primary health care contribution ...................................... 42 TU UT Models for Intervention ................................................................................................ 45 TU UT Models from overseas.............................................................................................. 46 TU UT Australian Models .................................................................................................... 48 TU UT 4. Health and Welfare ..................................................................... 51 TU UT TU UT A summary of the evidence ......................................................................................... 51 TU UT The health effects of child abuse and neglect.......................................................... 51 TU UT The Australian Indigenous context........................................................................... 53 TU UT Family welfare or child protection? .......................................................................... 55 TU UT Intervention points for family and child welfare............................................................ 59 TU UT Primary level interventions ....................................................................................... 60 TU UT Secondary level interventions .................................................................................. 62 Tertiary level interventions ....................................................................................... 62 Factors for success in interventions......................................................................... 63 Models applied in primary health care......................................................................... 64 Opportunities for a primary health care contribution ................................................ 67 5. Implications for Primary Health Care .......................................... 70 Lessons for family-centred primary health care........................................................... 71 Core services for child development........................................................................ 72 Best Practice: primary health care professional practice ......................................... 74 A new model: child development centres .................................................................... 75 Background.............................................................................................................. 75 Child development centres: key concepts ............................................................... 76 6. Scale Up and Sustainability ........................................................ 80 Principles of sustainability ........................................................................................... 80 Models from other developed countries................................................................... 80 Models from international development ................................................................... 82 ‘Scale up’: a system-wide approach to change ........................................................... 83 Mapping existing services and filling gaps............................................................... 83 Workforce................................................................................................................. 84 Prioritising child development research ................................................................... 85 Standards setting ..................................................................................................... 85 Changing expectations ............................................................................................ 85 Policy and community engagement ......................................................................... 86 Evaluation strategy .................................................................................................. 86 Next steps: child development centres........................................................................ 86 Resourcing the model and sustaining other services .............................................. 86 Workforce................................................................................................................. 87 Community engagement.......................................................................................... 87 Research and Evaluation......................................................................................... 87 Site selection for trials.............................................................................................. 88 Trial duration ............................................................................................................ 88 7. Bibliography ................................................................................ 90 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health 1. Introduction In contrast to general public perception, Indigenous health status has changed significantly over the last century. Exactly when and in what way it has changed has depended on locality – for example, the health history of the Aboriginal peoples of south-eastern Australia is different to that of those in the north of the continent or to those in the central deserts. Broadly speaking, however, one of the key changes in the health of Aboriginal and Torres Strait Islander communities since the 1960s has been the reduction in rates of mortality (especially infant mortality) from infectious disease. Although changes such as this are complex, the simple provision of improved access to medical services, both government run and community-controlled, undoubtedly played an important role. Since then, the pattern of ill health in many communities has shifted to one dominated by chronic disease and ‘life style’ conditions. While chronic disease has complex causes, the evidence is beginning to accumulate that in some parts of the country at least, mortality rates from chronic disease may be rising more slowly, or even falling, and that better resourcing of primary health care systems and better targeted programs to detect, treat and manage chronic disease are having an effect.1 TP PT The management of chronic disease in a primary health care setting is now well defined, extensively documented and based on good evidence. There is an important body of work guiding Indigenous primary health care services in Australia in the improvement of the management of chronic disease and the achievement of secondary prevention outcomes.2 Significantly, contemporary thinking about chronic disease management has moved beyond the concept of individual episodes of care for a patient, to the development of long-term relationships with them, their family, and their community.3 TP TP PT PT It is not the primary focus of this current project to add to the body of work on chronic disease management or, directly, to the improvement of secondary prevention outcomes for Australian Indigenous people. Given the already extensive work in these areas, this project could at best contribute to the margins of this field. 1 Thomas D, Condon J, Anderson I, Li S, Halpin S, Cunningham J and Guthridge S (2006) ‘Long-term trends in Indigenous deaths from chronic diseases in the Northern Territory: a foot on the brake, a foot on the accelerator’ MJA 185:145–149 TP PT 2 Bailie R, Si D, O’Donohue L and Dowden M (2007) ‘Indigenous health: effective and sustainable health services through continuous quality improvement’ MJA 186:525-528. See also the extension of the work described by Bailie et al through the Support, Collection, Analysis and Reporting Function (SCARF) of the Australian Government’s Healthy for Life program. TP PT 3 Zwar N, Harris M, Griffiths R, Roland M, Dennis S, Powell Davies G, Hasan I (2006) A systematic review of chronic disease management. Research Centre for Primary Health Care and Equity, School of Public Health and Community Medicine, University of New South Wales. TP PT INTRODUCTION Page 6 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health However, the very success of the secondary prevention of chronic disease highlights the fact that among Aboriginal and Torres Strait Australians, primary prevention approaches to chronic disease have struggled to make the same progress. This is where, we argue, a family-centred primary health care approach can make a significant contribution to the prevention of adult chronic disease. This will be the focus of this report. The social determinants of health A significant explanation for the relatively greater progress on secondary than primary prevention in disadvantaged communities has emerged in the theory of the social determinants of health. In essence, it states that many of the factors that determine illness lie outside the conventional boundaries of primary clinical care. Today in Western countries explanations of illness cast in terms of exposure to certain individual risk-factors such as smoking, alcohol misuse, or being overweight are a powerful way of understanding disease and illness in human populations and have been the basis for many improvements in the health of populations, especially when it comes to chronic disease. However, in the last fifteen years or so, evidence has grown rapidly to show that in addition to these individual causes lie other deeper causative factors: the so-called social determinants of health. A person’s social and economic position in society, their early life, exposure to stress, educational attainment, access or lack of it to employment, their exclusion from participation in society and their access to food and transport. All these exert a powerful influence on their health throughout their life.4 TP PT The social determinants approach has generally been welcomed by the primary care sector; after all, it fits well with a comprehensive approach to primary health care, and in the Australian Indigenous environment in particular it is congruent with the holistic approach to health developed by Indigenous communities and service providers. However, this approach also presents a challenge: if good health requires addressing the issues of poverty, education, life control, racism, housing, transport, addiction, employment and all the other social determinants, what does that mean for primary health care services? Clearly, many of these issues are beyond the direct responsibility or competence of even the best and most comprehensive of primary health care services, so how can they make the best contribution to addressing them, and hence preventing illness across the whole population? Often the result is that, at the same time as services and policy makers acknowledge the importance of the 4 For a concise examination of the social determinants of health, see Wilkinson R and Marmot M (1998) Social Determinants of Health: the Solid Facts, World Health Organization Regional Office for Europe. TP PT INTRODUCTION Page 7 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health social determinants of health, we consign them to the realm of background factors that are too hard to address.5 TP PT Beginning a healthy life ‐ a best buy among the social determinants? TP PT A number of the most important of the social determinants of health impact in early life.6 The experience of the child, even while still within its mother’s body, is critical for building a platform for a healthy life and deficits at this time are powerfully linked to disadvantage and ill health later in life. This is the importance of “life-course” thinking about health. TP PT These effects begin with the experience of the developing child in utero. The majority of human embryos have the potential to be born into long and healthy lives. However, from the moment of conception, this potential can be undermined by the poor maternal health of the mother. Maternal smoking, alcohol consumption, inadequate nutrition, maternal stress, illness and infection can all disrupt the development of the child in utero7 and are associated (along with young maternal age) to low birth weight of the baby.8 TP PT TP PT Poor maternal health can reduce the number of foetal cells, interfering with the development of the foetus’ organs or whole systems and leaving the child susceptible to poor health from that time – not just in the womb, in infancy or childhood, but throughout their life. It also appears that the immune system may also be affected by early brain development. Disturbance of this pathway exacerbates the diseases that these systems guard against such as infectious, inflammatory, autoimmune, and associated mood disorders.9 TP PT The time after birth is also a critical period for a child’s development and it appears that brain development in the early years set pathways in brain development that affect learning, health, and behaviour throughout the life cycle; a child lacking 5 Griew R and Weeramanthri T (2003) Investing in Prevention and Public Health in Northern Australia UK Australia Seminar: Federalism, Financing and Public Health 14-16 September 2003, Nuffield Trust and Australian Government, Canberra. TP PT 6 The theory and evidence for the importance of the early years in the Australian context is importantly summarised in Stanley F, Richardson S, and Prior M (2005) Children of the Lucky Country? How Australian society has turned its back on children and why children matter. Macmillan. Sydney. TP PT 7 Schultz R, Read A W, Straton A Y, Stanley F J, & Morich P (1991) ‘Genitourinary tract infections in pregnancy and low birth weight’ BMJ 303:1369–1373. See also Gibbs R, Romero R, Hillier S L, Eschenbach D A, & Sweet R L (1992) ‘A review of premature birth and subclinical infection’ American Journal of Obstetrics and Gynaecology 166:1515–1528. TP PT 8 TP AIHW 2005 op cit. PT TP 9 Sternberg E (2000) The Balance Within: the Science Connecting Health and Emotions. WH Freeman and Company. New York. PT INTRODUCTION Page 8 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health positive stimulation or exposed to chronic stress in the first few years of life may face life-long disadvantage.10 Poor experiences in brain development at this time can explain some of the major behavioural problems children may face11; severe stress from adverse child development environments has been shown to leave an indelible effect in brain structure and function which in later life could appear as depression, anxiety, posttraumatic stress, aggression, impulsiveness, delinquency, hyperactivity or substance abuse.12 There is evidence of a strong correlation between adverse early childhood development such as neglect and abuse, and addiction to alcohol and drugs in later life.13 Most importantly for this report, there now appears also to be a demonstrated association between early childhood experience and the development of chronic disease in adult life14, in particular a relationship between low birth weight and increased rates of hypertension, coronary heart disease, diabetes and autoimmune thyroid disease15 as well as an increased risk of hospitalisation and premature death.16 This evidence of the life-long health and social effects of experiences in the early years makes maternal and child health a critical intervention point for primary health care services in tackling the social determinants of health. Indeed Australia’s first comprehensive chronic disease prevention policy framework targeting Aboriginal health, the NT Preventable Chronic Diseases Strategy, identified maternal and child health as a best buy in chronic disease prevention.17 However, a life course approach to health cannot stop with maternal and infant health. The implications of wider concepts of child development have achieved increased prominence through the publication of key summaries such as From 10 McCain M N and Mustard F (1999) Early Years Study: Reversing the Real Brain Drain: Final Report. Ontario Children's Secretariat, Government of Ontario. 11 Mustard J F (2006) Early Child Development and Experience-based Brain Development The Scientific Underpinnings of the Importance of Early Child Development in a Globalized World. The World Bank International Symposium on Early Child Development (September 27-29, 2005). 12 Teicher M H (2002) ‘Scars that won’t heal: The neurobiology of child abuse’ Scientific American (March):68-75 13 Felitti V J, Anda R F, Nordenberg D, Williamson D F, Spitz A M, Edwards V, Koss M P, and Marks J S, 1998, ‘Relationship of Childhood Abuse and Household Dysfunction to Many of the Leading Causes of Death in Adults’ American Journal of Preventive Medicine 14(4). 14 See especially Barker D J, ed. (1993) Fetal and infant origins of adult disease. BMJ Publishing Group. London; Barker D J (1998) Mothers and babies and health in later life. Churchill Livingstone. Edinburgh; and Panneth N and Susser M (1995) ‘Early origin of coronary heart disease (the "Barker hypothesis")’ BMJ 310:411-412. 15 Eades S (2004) Maternal and Child Health Care Services: Actions in the Primary Health Care Setting to Improve the Health of Aboriginal and Torres Strait Islander Women of Childbearing Age, Infants and Young Children Aboriginal and Torres Strait Islander Primary Health Care Review: Consultant Report No 6 Commonwealth of Australia. 16 Power C & Li L (2000) ‘Cohort study of birthweight, mortality, and disability’ BMJ 320:840–1. 17 Weeramanthri T, Morton S, Hendy S, Connors C, Rae C and Ashbridge D (1999) NT Preventable Chronic Disease Strategy – Best Practice in Chronic Disease Control. Territory Health Services. Darwin INTRODUCTION Page 9 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Neurons to Neighbourhoods: the Science of Early Childhood Development.18 This approach emphasises the continuous and accumulating interaction between biology and experience, the importance of culture, the role of effective family relationships, and the need for early intervention for high risk children and families. This has led to a debate about the extent to which early experiences are modifiable by later interventions: on the one hand, the so-called ‘latency model’ emphasises the independent and long term effect of issues such as poor foetal development, low birth weight and poor nutrition. On the other hand, a ‘pathways approach’ emphasises the on-going, cumulative nature of these deficits and acknowledges that later interventions can ameliorate or even possibly overcome early developmental deficits.19 One thing that has become clear is the crucial importance of socioeconomic status in child development and health. While income is not the whole story, the ability to ameliorate early disadvantage is highly mediated by socioeconomic status such that there is a gradient in child development across the socioeconomic hierarchy. That is, not only are there differences in morbidity and mortality between those at the top and those at the bottom of the socioeconomic ladder but these differences exist across relatively small increments in social hierarchy. The important implication for governments and policy makers of this evidence is that while those children at the lowest end of the socioeconomic scale stand to benefit most from early intervention, it is arguable that all children can potentially benefit from high quality programs. Conversely, vulnerable children are also the most susceptible to the negative outcomes of poor quality programs. While class determinants and whole-of-country income disparities are of over-riding importance in life course health development, quality interventions and universal programs that are well-resourced and expertly delivered, can counteract early setbacks. Children given access to excellent early child development centres, with parenting support and involvement, will have better outcomes than children in similar circumstances who are not given such access.20 The evidence for the benefits of this approach is strong. In a key publication, Lynn Karoly21, examines in detail the costs and benefits in terms of Government expenditure of two key early childhood interventions programs in the United States: the Perry Preschool and the higher-risk families of the Elmira Parent/Early Infancy 18 Shonkoff J & Phillips D, eds, (2000) From Neurons to Neighbourhoods: The Science of Early Childhood Development. National Academy Press. Washington DC. 19 Hertzman C, and Wiens M (1996) ‘Child development and long term outcomes: A population health perspective and summary of successful interventions’ Social Science and Medicine 43 (7):1083-1095 20 McCain and Mustard 1999 op cit. 21 Karoly, L A (1998) Investing in Our Children: What We Know and Don't Know About the Costs and Benefits of Early Childhood Interventions, Rand Corporation. INTRODUCTION Page 10 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Project. It was found that, for high risk families and children, benefits exceed the costs by a factor of two or three to one, despite the fact that it was impossible to quantify in monetary terms many of the benefits (for example, better relationships between mothers and children). The savings to government resulted principally from participating families requiring lower access to publicly funded services later in life (for example health, special education, welfare and criminal justice services) but also through greater economic independence of participants throughout their lives. In Australia, a cost-benefit examination of early childhood interventions is hampered by the almost total lack of evaluated programs. Thus a review of such interventions22 concluded that there is limited evidence that they can produce potential returns in public investment. Nonetheless, there is no plausible reason why interventions in child development in Australia would not evaluate equally well as sound investments – which is why the Council of Australian Governments (COAG) committed in early 2006 to early childhood as a key component of its Human Capital Reform program. P P In its Communiqué, “COAG agreed that Human Capital Reform will be focussed first and foremost on a limited number of outcomes, … (which) could include: … • a reduction in the prevalence of key risk factors that contribute to chronic disease; • a reduction in the incidence of chronic disease; … • an increase in the proportion of children entering school with basic skills for life and learning; • an increase in the proportion of young people meeting basic literacy and numeracy standards, and improved overall levels of achievement…”23 P P Such an approach, based on child development principles is simply put, the ‘best buy’ for governments whose investment in primary health care goes beyond the provision of medical care to address the health of populations, now and into the future. 22 Wise S, da Silva L, Webster E, Sanson A (2005) The efficacy of early childhood interventions. Australian Institute of Family Studies Research Report No. 14, July 2005 TP PT TP 23 PT Council of Australian Governments (2006) A New National Reform Agenda – Communiqué, 10 February 2006. INTRODUCTION Page 11 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Health, education and welfare perspectives on child development A broad early childhood development perspective sees the antenatal, family and social environments as all critical in shaping young children’s social, developmental and cognitive capacities.24 However, the very breadth of this vision has lead to difficulties in adopting a unified approach to child development. TP PT While the different disciplines, professions and knowledge systems that claim expertise about children share an interest in child development, each has also a set of assumptions, interests and protective behaviours that serve to inhibit a more integrated approach to child development. Child health, education and welfare professionals look through different prisms at the same subject – the child and his or her development – but the prisms come to separate rather than unite their insights and their practice. As Shonkoff and Phillips put it, Closely related to the diversity of early childhood programs is the extent to which interventions are defined differently depending on the disciplinary lens through which they are viewed. Early intervention is a collection of service systems whose roots extend deeply into a variety of professional domains, including health, education, and social services … It is a field whose knowledge base has been shaped by a diversity of theoretical frameworks and scientific traditions, from the instruction-oriented approach of education … to the psychodynamic approach of mental health services … and from the conceptual models of developmental therapies ... to the randomized control trials of clinical medicine … At its best, early intervention embodies a rich and dynamic example of multidisciplinary collaboration. Less constructively, it can reflect narrow parochial interests that invest more energy in the protection of professional turf than in serving the best interests of children and families. 25 TP PT Head Start in the USA and a number of other innovative programs grew out of the desire for an integrated approach to child development in an environment that did not provide anywhere like adequate basic service access for poor families. In Australia it is arguable that, despite (or perhaps because of) better basic service infrastructure we have been less successful at integrating service silos to create integrated early childhood services. This frustration is possibly one of the drivers 24 RCH (Royal Children's Hospital) (2006) Policy Brief No 1 Early childhood and the life course. Available: www.rch.org.au/ccch. TP PT TP 25 PT Shonkoff & Phillips 2000 op cit, p339 INTRODUCTION Page 12 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health behind Australian heads of government designing the COAG Human Capital early childhood stream from 2006. Were the creation of a new child development approach to be undertaken from a clean slate, no-one would argue for as divided an early childhood field as we have currently. We understand the benefits of clear disciplinary knowledge and demarked fields of service provision, especially in the testing environments in which service providers to disadvantaged children operate. However, family life and child development in such environments require both better linkages and a more integrated understanding of the child and his or her family. In short we need professionals and policy makers to act in the knowledge that we are all simply looking through different prisms at the same children and families. In this report we will consider both how the service silos and professions can work together more effectively, and in particular at the role that primary health care can play, but also we will take the opportunity to envisage a service system where the boundaries between the service silos and professions are substantially dissolved and new service forms for Australian Indigenous families can be developed. The Indigenous family context The likely value of child development as a life course investment in Aboriginal and Torres Strait Islander families is strengthened by an examination of the Indigenous family context.26 TP PT The Australian Indigenous population is younger and the fertility rate higher than for the rest of the population. In 2001, Indigenous children aged 0–14 years accounted for 39% of the Indigenous Australian population. At the 2001 census there were about 179,000 Indigenous Australian children. These children made up 4.5% of the total Australian child population in 2001.27 TP PT Household composition and the family environment is often more complex in families with Aboriginal children. The best data on Aboriginal family life comes from the West Australian Aboriginal Child Health Survey (WAACHS).28 This found that one in 12 households had Aboriginal children being primarily cared for by aunts, grandparents and other extended family and non-family members. This household arrangement TP PT 26 Note that for ease of expression in this report, we use the terms ‘Aboriginal’, ‘Indigenous’, and ‘Aboriginal and Torres Strait Islander’ interchangeably to refer to Australia’s Indigenous peoples, unless specifically noted otherwise. TP PT 27 AIHW (Australian Institute of Health and Welfare) (2005) A picture of Australia’s children, AIHW cat. no. PHE 58. Canberra. TP PT 28 Zubrick S R, Lawrence D M, Silburn S R, Blair E, Milroy H, Wilkes T, Eades S, D’Antoine H, Read A, Ishiguchi P & Doyle S (2004) The Western Australian Aboriginal Child Health Survey: The Health of Aboriginal Children and Young People, Telethon Institute for Child Health Research, Perth. Available: http://www2.ichr.uwa.edu.au/waachs/?q=/waachs/ TP PT INTRODUCTION Page 13 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health has been shown to place children at a higher risk of emotional or behavioural difficulties and lower academic performance. WAACHS also found that the primary carers in these households are less likely to have had the full benefits of education – compared with the general population, carers of Aboriginal children have lower levels of education with approximately one third of carers of Aboriginal children having left school before completing Year 10. Approximately 15% of dwellings with Aboriginal children are overcrowded, and about the same proportion have poor housing quality. Aboriginal family mobility in West Australia was also found to be elevated, with Aboriginal children aged 6 years having lived in an average of 3.2 homes. Families of Aboriginal children report much higher levels of stress caused by deaths in the family or community, incarceration, violence and severe hardship. WAACHS reported that 22% of Aboriginal children aged 0-17 years were living in families where 7-14 major life stress events had occurred in the 12 months prior to the survey and the two major factors associated with families experiencing so many stressful events were family financial strain and the number of neighbourhood problems reported by the primary carer. Poor family functioning was also associated with family financial strain which is present in over half of families with Aboriginal children in Western Australia. The quality of the child’s diet was also independently associated with poor family functioning. Aboriginal and Torres Strait Islander families are disrupted also to a higher extent by the imprisonment of both men and women at rates 16 times higher for men and 23 times higher for women than other Australians. Australian women are imprisoned on average at a rate of 16 women per 100,000 of the adult female population. Indigenous women however are imprisoned at a rate of 366 per 100,000 of the adult female population. Imprisonment of all women is also rising annually.29 The above information on the experience of Indigenous families and households, reinforces the importance of ameliorating the ways in which family disadvantage and stress impact on Indigenous children’s development, even from before they are born. 29 ABS (Australian Bureau of Statistics) (2006) Prisoners in Australia Catalogue no 4517.0. See also Krieg A, 2006, Aboriginal incarceration: health and social impacts MJA 184:534-536 INTRODUCTION Page 14 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Family‐centred primary health care: towards a definition The realities of Aboriginal family life outlined above have important implications for primary health care services and policy makers in developing a family-centred approach. To the extent that family-centred primary health care is about giving Aboriginal people the best platform for health over the life course, this means being wary of assumptions about the construction of families in the development family-centred services. For this project the Aboriginal or Torres Strait Islander “family” in family-centred primary health care is not limited either to an assumption of a nuclear family – clearly it is necessary for health care providers to assume that Indigenous children will often have other significant carers than just their biological mother and father. It is also necessary to understand that, although there is a biological importance of maternal health, children are part of a family system, with fathers, aunts, uncles, grandparents and other siblings (and their own health issues) often key to determining the outcome of child development and resilience. There is no widely-agreed definition of what constitutes ‘family-centred primary health care’. For the reasons explained above, this project will take it to be more than about a family friendly feeling to primary health care, or even family focused clinical practice. Instead we propose a two part definition as follows: 1. Family-centred primary health care moves beyond providing care to the individual patient, to seeing them as being embedded in a family and providing services on that basis; and 2. Family-centred primary health care takes a life course approach, which, without neglecting adult health, focuses specific attention on establishing early life resilience and advantages through a focus on child development. In this sense family-centred primary health care involves an attempt to draw two areas normally considered only as part of the “social determinants of health” background, education and family welfare, into the foreground of primary health care practice. Methodology This review was commissioned by the Office for Aboriginal and Torres Strait Islander Health from a team headed by Associate Professor Robert Griew, Managing Director of Robert Griew Consulting, together with JTAI Pty Ltd and a number of individual experts in Aboriginal and Torres Strait Islander programs as follows: INTRODUCTION Page 15 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health • Professor Sandra Eades, the head of Aboriginal health at the Sax Institute and an expert in Aboriginal maternal and child health; • Associate Professor Tess Lea, co-director of the School of Social Policy Research at the Charles Darwin University and an expert in Indigenous education policy; and • Ms Carol Peltola, an expert in child and family welfare, with a strong background in Indigenous welfare issues. JTAI is a firm specialising in community and primary health care development in the Asia Pacific region, also working in Indigenous health in Australia. Although the primary source informing this report was the published literature, the review team also sought specific views from experienced professionals in both nonGovernment and Government health and welfare sectors. We gratefully acknowledge their contribution. We would also like to acknowledge the constructive comments from Australian Government officials and in particular Ms Anne Clarke of the Office for Aboriginal and Torres Strait Islander Health. Of course, the report remains the product of the review team and does not necessarily represent the views of those who assisted us or of the Australian Government. The research approach used was for the core team from Robert Griew Consulting to seek from the other experts in the team a set of key resources covering child health, education and welfare, with a focus on Indigenous children in Australia and overseas. As well, websites and other informants were interrogated, including through the Sax Institute and the collaboration between the School of Social Policy Research and the Menzies School of Health Research. The material accessed included a number of other reviews that have been undertaken in Indigenous maternal and child health and education. This allows the Chapters analysing these two areas to rely more heavily on secondary sources. There was less such material accessed in Indigenous child and family welfare and the team found less well developed analysis to support exploration of the relationship specifically between child and family welfare and health. For this reason the Chapter covering this area relies more on primary source material and the team’s own analysis of child protection data. This report has been prepared as a review, targeting policy makers, of what matters in the literature, rather than as a systematic or meta review of the literature. It includes material from the world of professional practice that would not necessarily be included in a systematic review and does not include all of the vast literatures in the three fields traversed. INTRODUCTION Page 16 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health The aim is to give the policy maker a clear picture of the literature and experience that should sensibly be taken into account from across three policy and professional domains that we know are related to each other but which have been hard to unite in practice. Outline of report The aim of this report is to outline the evidence as to how child development impacts on health over the life course, and to explore the implications for primary health care practice and policy. The contract of engagement from the Australian Government Department of Health and Ageing directed the team to provide a detailed review of the literature on current family-centred primary health care service delivery approaches, focussing on children between 0 and 8 years and their families within Indigenous populations, and evaluations of any models, programs or approaches. This was to be accompanied by a report documenting the key elements relevant to the evolution of best practice in service delivery, and recommendations on strategies and priorities for further development of identified best practice models, for both mainstream and Indigenous specific services. With the agreement of the Department both the review of the relevant literature and the written report with recommended ways forward are included in this report. In overview, the structure of this report is as follows. Following this introductory chapter there are chapters outlining the evidence on maternal and child health, the relationship between health and education, and health and family welfare. Each of these chapters outlines the lessons from the leading articles in the scientific literature and from accounts of professional practice. In Chapter Two, we examine the first of our three domains – maternal and child health. This is commonly conceived as already being an important part of a comprehensive model of primary health care. We provide a summary of the evidence about the menu of required service delivery and interventions for mothers and young children, together with the challenges that taking a child development focus and a family-centred clinical approach raise for this service menu. In Chapter Three, we look at the relationship between education and health. This is the second domain, and one where key service provision stands outside the primary health care sector. We provide a summary of the evidence on the relationship between education outcomes and health outcomes and what interventions and principles are important, before looking at the challenges that this raises for primary health care practice – how can primary health care ‘complete the circuit’ and help ensure that Aboriginal children gain the health benefits of education? INTRODUCTION Page 17 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Chapter Four examines our third key domain that is also conventionally seen as outside the primary health care sector: child and family welfare. Here again we present a summary of the evidence about the relationship between family welfare and child health and development, the current challenges in child protection and once again what opportunity these throw up for primary health care practice. Two further chapters spell out the implications of the evidence summarised in Chapters Two, Three and Four. Chapter Five brings together the evidence from the three domains of maternal and child health, education and health, and welfare and health to look in detail at the implications of the evidence for primary health care practice. This chapter raises two possible models for reform: the first assuming the continued existence of three separate service systems in health, education and welfare; and the second a more radical model proposing an integrated model of family-centred service that integrates a range of services. Such an approach is consistent with recent key documents in this area, in particular the Little Children are Sacred report commissioned by the Northern Territory Government’s30, and the Australian Government’s Indigenous Child Care Services Plan31. Critically, we argue that this model of integrated, holistic early childhood services is worth piloting in a number of robust service settings. Finally in Chapter Six, we look at meeting the challenge of ‘scale up’ and sustainability for both of the models presented in Chapter Five, outlining the considerations relevant to implementation beyond the creation of small scale excellent services, to system wide reform. Issues canvassed include workforce, funding models, standards development, institutional and professional change processes, community engagement, site selection and evaluation strategy. 30 Anderson P and Wild R (2007) Little Children are Sacred: Report of the Northern Territory Board of Inquiry into the Protection of Aboriginal Children from Sexual Abuse. Northern Territory Government. Darwin. 31 Australian Government (2007) The Indigenous Child Care Services Plan August 2007. Department of Families, Community Services and Indigenous Affairs. Commonwealth of Australia. Canberra. See also Australian Government (2007) Towards an Indigenous Child Care Services Plan: a summary of the findings from consultations with Indigenous Communities 2005-06. Department of Families, Community Services and Indigenous Affairs. Commonwealth of Australia. Canberra. INTRODUCTION Page 18 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health 2. Maternal and child health In Chapter One we outlined the importance of the health, education and welfare sectors in enhancing child development and thus in addressing a key social determinant of health across the life course. In the two chapters following this one, regarding the relationships between health and education and health and welfare, we discuss how primary health care services can contribute to the success of these other sectors, and how by working with them they can most effectively achieve their own goals of improving the health of the community. However, the logical place to start is with the role of primary health care services in enhancing the health of mothers and children. Maternal and child health services are ‘core business’ for the primary health care sector and the accessibility, appropriateness and effectiveness of these services is central to the concept of family-centred primary health care. This focus is directly on the health of children and on mothers because of the importance of pregnancy outcomes for children. As noted in Chapter One a familycentred approach to maternal and child health requires primary health care services to focus on the child’s whole family, as the health of all those caring for children is important to the health of children. This chapter draws on the extensive literature on maternal and child health but includes lessons that can be extrapolated to the provision of health services to all families.32 We will briefly review the evidence on maternal and child health amongst Aboriginal and Torres Strait Islander communities in Australia, followed by a overview of the links between child and maternal health and health later in life. We will then outline a number of key intervention points for primary health care services, together with the challenges that taking a child development focus and a family-centred clinical approach raise for this service menu. Last we will summarise a number of service models which already embody a family-centred primary health care approach. TP PT 32 This chapter draws upon the summary of the evidence contained in Eades 2004 op cit ), by team member Dr Sandra Eades, formerly of the Menzies School of Health Research in Darwin. Her paper was part of a series commissioned by OATSIH; its summary of the literature is a key reference point for those wishing to get an overview of the literature in this field. TP PT MATERNAL AND CHILD HEALTH Page 19 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health A summary of the evidence The Health of Indigenous Women and Children It is well known that Aboriginal and Torres Strait Islander women have considerably poorer general health than other Australian women. This remains true despite recent gains in Aboriginal women’s health in the Northern Territory, which saw an increase in Aboriginal women’s life expectancy of almost three years (from 65.0 to 67.9 years) between 1996-2000 and 2001-2003.33 TP PT Not surprisingly, Indigenous women also have poorer maternal health than other Australian women: higher rates of chronic disease, poorer nutrition, and higher levels of genital and urinary tract infections can all complicate pregnancies. Furthermore, they have higher smoking rates and, while it appears that proportionately fewer Aboriginal women than non-Aboriginal women drink alcohol, the hazardous use of alcohol amongst Aboriginal women of child-bearing age is of great concern.34 TP PT They are more likely to become pregnant during the teenage years (22.6% of births, compared to 4.2% for non-Indigenous mothers35) and are less likely to access early antenatal care – in the Northern Territory, for example, the proportion of Indigenous women who received antenatal care in the first trimester of their pregnancy was around half of that for non-Indigenous women.36 TP TP PT PT Consistent with this picture, Indigenous babies are over twice as likely as nonIndigenous babies to be born of low birth weight (12.9% compared with 6.1%37) with little improvement nationally since 1991.38 TP TP PT PT The immediate effects of low birth weight are seen in poorer health in childhood reflected in a higher risk of dying in the first years of life and a greater susceptibility to illness and hospitalization.39 Beyond these physical manifestations, low birth weight is associated with neurological complications and psycho-social and cognitive problems TP PT 33 DHCS (NT Department of Health and Community Services) (2006) NT Health Gains Fact Sheet http://www.nt.gov.au/health/docs/hgains_factsheet_mortality2006.pdf) TP PT U U 34 ABS and AIHW (Australian Bureau of Statistics and Australian Institute of Health and Welfare) (2005) The Health and Welfare of Australia's Aboriginal and Torres Strait Islander Peoples. ABS Catalogue No. 4704.0, AIHW Catalogue No. IHW14. Commonwealth of Australia. TP PT 35 TP PT 36 TP PT 37 TP PT ibid. Eades 2004 op cit. AIHW 2005 op cit. 38 Plunkett A, Lancaster P & Huang J (1996) Indigenous Mothers and Their Babies, Australia 1991–1993, cat. no. PER 1 (Perinatal Statistics Series No. 4), AIHW National Perinatal Statistics Unit, Sydney; ABS and AIHW 2005 op cit. TP PT TP 39 PT AIHW 2005 op cit p37. MATERNAL AND CHILD HEALTH Page 20 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health – for example, even in teenage years, children of extremely low birth weight are less likely to perform well at school.40 TP PT In their early years, Aboriginal and Torres Strait Islander children continue to have poorer health than the Australian average. While infant mortality improved nationally in the decade from 1993 (decreasing by around 3.3% per year) the mortality rate for those in their first year of life remains almost three times that of other Australian infants (13.0 per 1,000 live births compared to 4.5 per 1,000 live births).41 Note again that this is despite improvements in infant death rates in the Northern Territory, which have fallen by over one third in the period 1996-2000 to 2001-2003.42 TP P PT P A higher burden of hospitalisations in general, and illness from infections, in particular respiratory infections, typifies the health profile of many Indigenous children throughout their childhoods.43 TP PT Intervention points for maternal and child health Although best practice primary health care already encompasses many of the following interventions, making explicit the links between maternal and child health and the development of a long and healthy life is an important task. This section seeks to identify the key interventions in the primary health care sector that are critical to contributing to health throughout the life course. For the sake of clarity we divide these into two groups: those interventions focused primarily on the health of the mother (and hence directly or indirectly the baby) before and during pregnancy, and those focused on the child in its infancy. Interventions primarily focused on women before and during pregnancy Tobacco Smoking during pregnancy is generally agreed to be the single most important area for action to improve low birth weight and infant mortality.44 It is associated with preterm birth, birth anomalies and perinatal deaths45, obstetric complications as well as increased risk of sudden infant death syndrome, asthma, lower respiratory tract TP TP PT PT 40 Saigal S (2000) ‘School difficulties at adolescence in a regional cohort of children who were extremely low birth weight’ Paediatrics 105:569–74. TP PT 41 TP PT 42 TP PT 43 TP PT AIHW 2005 op cit p13. DHCS 2006 op cit. ibid. 44 AIHW 2005 op cit p 41; Eagar K, Brewer C, Collins J, et al (2005) Strategies for Gain — the evidence on strategies to improve the health and wellbeing of Victorian children. Centre for Health Service Development, University of Wollongong p56. TP PT TP 45 PT Walsh R A, Lowe J B, and Hopkins P J (2001) ‘Quitting smoking in pregnancy’ MJA 175: 320–323. MATERNAL AND CHILD HEALTH Page 21 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health infections, middle ear diseases and stillbirth.46 In addition, exposure to environmental smoke among infants and young children increases the risk of respiratory infections, asthma and otitis media. TP PT Of particular concern is the high proportion of Aboriginal women who smoke during pregnancy: the WA Aboriginal Child Health Survey found that 47% of Indigenous mothers had smoked tobacco during pregnancy, while even higher rates (over 65%) have been found by at least two other studies.47 Although still serious, maternal smoking rates in the general community are considerably lower, documented at around 18%.48 TP TP PT PT Primary health care services are well placed to deliver quit smoking interventions for women in general and pregnant women in particular and a recent review demonstrated that smoking cessation programs during pregnancy apparently reduce smoking, low birth weight and preterm birth.49 TP PT Alcohol The consumption of alcohol by pregnant women is significantly related to increased risk of foetal death and low birth weight, even in cases where the drinking is in the moderate range.50 This effect can be related to even the earliest weeks after conception, before a woman may be aware that she is pregnant. TP PT Aboriginal women are more likely to consume alcohol at a dangerous level than nonAboriginal women: the 1995 National Health Survey, for example, found that 9% of Indigenous female drinkers were classified as high-risk drinkers, three times the rate for the population as a whole.51 These drinkers are at the greatest risk of damaging the unborn child as it develops. TP PT Brief interventions from primary health care services are effective in reducing alcohol consumption of women of child bearing age: education, advice and counseling have been shown to be effective in reducing alcohol consumption in the short term, and dangerous levels of drinking over the long-term, especially for women who become pregnant in the period after the initial intervention.52 TP 46 TP PT PT Zubrick et al 2004 op cit. 47 de Costa C & Child A (1996) ‘Pregnancy outcomes in urban Aboriginal women’ MJA 164: 523–526; Eades S & Read A (1999) ‘Infant care practices in a metropolitan Aboriginal population’ Journal of Paediatrics and Child Health 35: 541–544. TP PT 48 TP PT AIHW 2005 op cit p xiii 49 Lumley J, Oliver S, and Waters E (2003) Interventions for promoting smoking cessation during pregnancy (Cochrane Review). The Cochrane Library. Oxford, Update Software. Issue 1. TP PT 50 Little R E, Asker R L, Sampson P D, and Renwick J H (1986) ‘Fetal Growth and Moderate Drinking in Early Pregnancy’ American Journal of Epidemiology 123: 270–278; Faden V B, Graubard B I, and Dufour M (1997) ‘The relationship of drinking and birth outcome in a US national sample of expectant mothers’ Paediatric and Perinatal Epidemiology 11(2): 167–180. TP PT 51 TP PT TP 52 PT Eades 2004 op cit p21. ibid MATERNAL AND CHILD HEALTH Page 22 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health It is also important to observe that Aboriginal primary health care services have often played important roles in public campaigns around the broader political economy of alcohol, in particular around availability, licensing and pricing. Sexual health Poor sexual health, especially sexually transmitted infections, and other genitourinary infections are associated with preterm and/or low birth weight babies. Indigenous communities typically have high rates of STIs and other infections. A Western Australian study showed that just over half of Aboriginal and Torres Strait Islander women who gave birth to low birth weight babies had a genitourinary tract infection compared with only 13% of other women.53 TP PT Antenatal care Late presentation for antenatal care is associated with poor birth outcomes among Indigenous women.54 TP PT While schedules for antenatal visits vary across Australia, the most commonly accepted standard is monthly visits until 28 weeks, fortnightly visits from 28 to 36 weeks, and finally weekly visits after 36 weeks. There is little published information documenting the frequency of Aboriginal women’s attendance for antenatal care, though a study has identified that amongst antenatal attendances at a major urban obstetric hospital, over one in ten Indigenous women did not receive their first antenatal care until after 31 weeks of pregnancy.55 TP PT Primary health care services are well placed to identify and reach out to pregnant women earlier in pregnancy than they may otherwise seek out antenatal care. This requires both effective population age-sex registers as a cornerstone of good primary health care management and effective community/family engagement and cultural safety strategies on the part of the primary health care service. Family planning Short intervals between pregnancies has been shown to be associated with low birth weight and preterm births56 as this allows less time for a woman’s body to recover nutritionally and also because of the added stress of caring for more than one young child. TP 53 TP PT 54 TP PT PT ibid ibid p6 55 Najman J M, Williams G M, Bor W, Andersen M J, and Morrison J (1994) ‘Obstetrical outcomes of Aboriginal pregnancies at a major urban hospital’ Australian and New Zealand Journal of Public Health 18:185–9. TP PT TP 56 Khoshnood B, Lee K S, Wall S, Hsieh H L, and Mittendorf R (1998) ‘Short Interpregnancy Intervals and the Risk of Adverse Birth Outcomes among Five Racial/Ethnic Groups in the United States’ American Journal of Epidemiology 148:798–805 PT MATERNAL AND CHILD HEALTH Page 23 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Similarly, low birth weight is also associated with a low maternal age. Indigenous women tend to have children at a younger age than the overall female population, with more than one in five Indigenous mothers being aged under 20 years, compared with less than one in twenty-five non-Indigenous mothers.57 TP PT Family planning support and advice are important to enable Aboriginal and Torres Strait Islander women to make informed decisions about the timing of their pregnancies. There is evidence that pregnancy counseling services for young mothers (under twenty years) have a significant positive effect on birth weight.58 Again this is a core primary health care service requiring effective community / family engagement and effective cultural safety strategies on the part of primary health care services. TP PT Nutrition and folate While maternal nutrition is obviously an important determinant of a healthy birth, it has been the subject of much debate in the literature. It appears that the provision of nutritional advice alone has little effect, but there is some evidence that actual dietary supplementation can have an effect for disadvantaged women, although a number of other problems have been raised with this approach relating to expense and ‘compliance’.59 TP PT A particular issue deserving attention is that of folate (a vitamin found in leafy green vegetables, fruits, beans and peas) which is essential for the healthy development of the foetus. It has long been known that folate supplementation significantly reduces the incidence of neural tube defects amongst babies. Indigenous mothers are about 40% more likely to have a baby with a neural tube defect than non-Indigenous mothers. In 1998, folic acid fortification of a large variety of cereal products became mandatory in Canada. An evaluation of the impact of this measure found that the prevalence of neural tube defects decreased from 1.58 per 1000 births before fortification to 0.86 per 1000 births, a 46% reduction. The magnitude of the decrease was proportional to the pre-fortification baseline rate and regional differences in rates of neural tube defects almost disappeared after fortification began.60 TP PT The mandatory fortification of food with folate is currently a matter being considered by all Australian Governments. 57 AIHW (Australian Institute of Health and Welfare) (2006) Australia’s health 2006. AIHW cat. no. AUS 73. Canberra: AIHW. TP PT T T T P 58 Eagar et al 2005 op cit p60 59 ibid p58 60 De Wals P, Tairou F, Van Allen M I, Uh S H et al. New England Journal of Medicine. 357(2):135-42. MATERNAL AND CHILD HEALTH Page 24 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Social support and education It has been argued that social support and health education programs directed at disadvantaged women would be likely to decrease the incidence of low birth weight. A comprehensive review of such programs (which include counseling, advice, and support with practical matters such as transport and household tasks) found no significant reductions in the probability of a low birth weight baby, although some other psychological benefits for mothers were noted.61 A similar conclusion has been reached for Indigenous women in Australia.62 TP TP PT PT However, social support and health education for pregnant mothers is often provided embedded within a broader antenatal program – as exemplified by programs such as the Mums and Babies program in Townsville – and in this context may contribute to the success of these services. Part of the effectiveness of such integrated programs may be in the improvement of family engagement with health care services and their cultural safety. In this sense cultural safety is not just a matter of “safety” in terms of Indigenous sensitivities but also specifically from the point of view of women and children. This is one of the success factors cited as a result of the creation of a specific “mums and bubs” clinic in the Townsville example63 (see below). TP PT Interventions primarily focused on the child after birth Breastfeeding Breastfeeding is one of the most important health behaviours to impact upon the survival, growth, development and health of children in their first years. The mother’s antibodies present in her milk help protect an infant while its own immune system is developing and has a protective effect against conditions such as diarrhea, respiratory infection, otitis media, meningitis, sudden infant death syndrome (SIDS), diabetes, eczema and asthma. It has also been associated with positive health effects for the mother and improved emotional bonding between her and her baby.64 Breastfeeding has also been positively associated with later child cognitive outcomes.65 TP TP PT PT In Australia, there is conflicting evidence about breastfeeding rates amongst Indigenous mothers. Some data suggests that the proportion of babies being fully breastfed at 4 months was lower among those with Aboriginal and Torres Strait Islander mothers than for those with non-Aboriginal and non-Torres Strait Islander 61 Hodnett ED, Fredericks S (2003) Support during pregnancy for women at increased risk of low birthweight babies. Cochrane Database of Systematic Reviews, Issue 3. T T 62 Zubrick et al 2004 op cit. 63 Dr K Panaretto, personal communication 64 AIHW 2005 op cit p31 65 Pollock J I (1994) ‘Long-term associations with infant feeding in a clinically advantaged population of babies’ Developmental Medicine and Child Neurology 36:426-440 MATERNAL AND CHILD HEALTH Page 25 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health mothers66. Nonetheless, the Western Australian Aboriginal Child Health Survey showed that the breastfeeding rate for children at age 12 months was considerably higher for Indigenous mothers than for Western Australian women in general.67 TP PT TP PT Nutrition While breastfeeding is probably the most important activity for ensuring good nutrition for infants, the introduction of solid foods to infants’ diets and dietary guidelines for infant feeding are also important. If infants’ dietary requirements for growth and development in the first year of life are not met, they can be susceptible to a whole range of illnesses and infections. In many regions of Australia, Indigenous infants have been shown to have higher rates of failure to thrive and anaemia.68 TP PT It is important to note that being overweight is also an issue for some Indigenous children – one study in the Northern Territory found an excess of both underweight and overweight children in urban areas, while remote areas had a large excess of underweight children.69 The proportion of over nourished babies (born over 4500g) has also been reported as an emerging concern in the Torres Strait, a community with very high rates of Type II Diabetes with very early onset.70 TP PT TP PT Programs to monitor infant growth and development, treat anaemia and infections among and to provide support and advice to parents about infant feeding is an important part of primary health care. Further, primary health services can play an important role in advice and activism around the availability of nutritious food, especially in remote areas where the simple lack of access to nutritious food is often the base problem which must be addressed if any other intervention is to succeed. In Chapter Four we will review the evidence on the relationship between child health and child welfare services. Child welfare staff have sometimes raised concerns that one unintended consequence of a focus on monitoring infant growth and development in primary health care services can be an increase in notifications of disadvantaged children for “neglect” without any concurrent action to improve food supply, support for family budgeting or other public health measures that might more effectively address the needs of infants “failing to thrive.”71 This concern has implications for the skills and clinical approaches of primary health care services. TP 66 AIHW 2005 op cit p33 67 Zubrick et al 2004 op cit. 68 Eades 2004 op cit. PT 69 Mackerras D (2001) ‘Birthweight changes in the pilot phase of the Strong Women Strong Babies Strong Culture Program in the Northern Territory’ Australia and New Zealand Journal of Public Health 25: 34–40 70 Dr Ashim Singha, outreach physician Cairns Base Hospital, personal communication. 71 J Vadivaloo, Child Protection expert, NT, personal communication MATERNAL AND CHILD HEALTH Page 26 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Immunisation Ensuring that all children are appropriately immunised is obviously a key aim of primary health care maternal and infant health services. It appears that there is some uncertainty about the level of vaccination coverage for Indigenous children, with some estimates being much lower than the general population to others indicating that they are similar to other children. Indigenous children from remote areas tend to have higher immunisation rates than those in urban areas.72 TP PT In remote communities even a barely adequately resourced primary health care service should have the capacity, access to children and record systems to support the maintenance of high vaccination rates. The priority of this activity is self evident to professionals in such services. In urban settings, primary health care services may have a higher proportion of occasional clients and not have a clear picture of a child or families ongoing care requirements. It is possible that the lower immunisation rates reported in some urban Indigenous populations also represents a paradoxical lack of actual service access or health seeking behaviour on the part of Aboriginal and Torres Strait Islander families. This is clearly a priority for all urban primary health care providers with Indigenous clientele and requires cooperation between those service providers. Home visiting programs Finally in this section we examine the potential of primary health care staff visiting pregnant women and young families at home as a key intervention both to improve the health of mothers and children and a number of other long term outcomes for children. There have been models of health staff visiting the home of mothers with young children for decades and there are many such models from which to choose. Recent interest has been captured in Australia by the work of David Olds and his colleagues in the USA, with the Australian Government allocating $40 million to a rigorous pilot of a similar model in seven rural and remote Indigenous communities. The importance of Olds’ studies73 is that they are based on a detailed, structured and documented model, clarity about workforce requirements and training, and a rigorous approach to evaluation. The model has Randomised Control Trial results in three different United States jurisdictions. They show that, provided the model is followed TP 72 PT AIHW 2005 op cit p33 73 Olds D L, Eckenrode J, Henderson C R, Kitzman H, Powers J, Cole R, Sidora K, Morris P, Pettitt L M, Luckey D (1997) ‘Long-term effects of home visitation on maternal life course and child abuse and neglect: fifteen-year followup of a randomized trial’ JAMA 278:637-43; Olds D, Henderson C R, Cole R, Eckenrode J, Kitzman H, Luckey D, Sidora K, Morris P & Powers J (1998) ‘Long-term effects of nurse home visitation on children's criminal and antisocial behavior: fifteen-year follow-up of a randomized controlled trial’ JAMA 280:1238-1244; and especially Olds D L, Henderson C R, Kitzman H J, Eckenrode J J, Cole R E and Tatelbaum R C (1999) ‘Prenatal and Infancy Home Visitation by Nurses: Recent Findings’ The Future of Children Home Visiting: Recent Program Evaluations 9(1):4465. T T MATERNAL AND CHILD HEALTH Page 27 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health and for the populations he has studied, there are positive results in a number of key outcome measures. Positive outcome measures included a number of health measures – such as increased birth weights of babies born to young and smoking mothers, reduced attendances in Emergency Departments as a result of safer home environments, smoking rates among mothers and greater father involvement, eg in birthing classes. As well there was a trend to higher developmental scores at 6, 12 and 24 months and babies in the interventions group cried less, were less likely to be punished and were exposed to a greater number of appropriate play materials. There was no impact on education outcomes at age 4, nor was there a reduction in incidence child abuse, although there was a reduction in severity. Mothers in the control group were also found to be less at risk of rapid successive pregnancies, which are a major impediment for women to successfully complete education and/or get jobs, with consequent long-term effects on themselves and their children74. TP PT Olds also notes, however, that when he substituted paraprofessionals for nurses the gains fell away, as it did when other essential program elements were modified. There is a general lesson, that taking the “idea” of an intervention is not as effective as implementing that idea in a disciplined way. It is also likely that, in common with many other interventions, the presence of severe violence or significant illicit drug use in a home makes home visiting much less likely to succeed. The importance of this body of work for the development of family-centred primary health care is that it points to the importance of design integrity and not watering down interventions for disadvantaged populations; that sustained home visiting has been shown to produce a number of very important outcomes (though not as a panacea) in areas that are both important and difficult for service providers; and that it offers a well documented, indeed manualised, intervention. Models in Aboriginal and Torres Strait Islander maternal and child health In this section we examine a number of successful models of primary health care innovation to improve the effectiveness of maternal and child health services in Aboriginal and Torres Strait Islander communities. There are a limited number of published evaluations on successful interventions in the field of Aboriginal and Torres Strait Islander maternal and child health. The following is a sample of some of the 74 Olds et al 1999 op cit. p 47 MATERNAL AND CHILD HEALTH Page 28 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health key programs cited in the literature.75 We have selected these particular service for variety in governance structure, program and location, and because they illustrate some of the varied paths to success. TP PT We follow the case studies with a list of some of the key factors for success. Mums and Babies Program – Townsville Aboriginal and Islander Health Service 76 P P Established in 2000 to address community concern regarding pregnancy, birth and infancy outcomes in the Indigenous community in Townsville, this multidisciplinary team provides comprehensive antenatal care, postnatal care, immunisations, growth monitoring, developmental screening and hearing screening for pregnant women, families, infants and young children.77 TP PT While run from an Aboriginal community-controlled health service, the Program has close working links with a number of Queensland Government programs, as well as Centrelink, James Cook University, and the Townsville Division of General Practice. An evaluation of this program indicated a large increase in services provided and evidence of some reductions in both low birth weight and perinatal death.78 TP PT Congress Alukura Alukura was developed by Central Australian Aboriginal Congress in Alice Springs during the mid-1980s as a women’s health and birthing centre for the Aboriginal women of Central Australia. It is an important centre for the delivery of maternity and women’s health services for women (particularly those from Alice Springs), providing home visiting, transport, specialist / hospital liaison, a limited mobile bush service and health education. It is staffed by a multidisciplinary team including a doctor, midwives, Aboriginal Health Workers, nurses, a liaison officer, health educators, with the assistance of traditional Grandmothers. From the period 1986-1990 to the period 1996-99, the average birth weight of Aboriginal infants in the Alice Springs urban area increased from 3,168g to 3,268g, an increase of 100g.79 TP PT 75 For a more complete list, see Eades 2004 op cit and Herceg A (2005) Improving Health in Aboriginal and Torres Strait Islander Mothers, Babies and Young Children: A Literature Review, Office for Aboriginal and Torres Strait Islander Health 76 We understand that in recent times this program has essentially ceased, with some key staff leaving the Townsville Aboriginal and Islander Health Service. Undoubtedly, the reasons for this are complex and will be the subject of further investigation. 77 Panaretto K (2003) Mums and Babies Project: Project Report. Townsville, Townsville Aboriginal and Islanders Health Service Limited. 78 Atkinson R (2001) Antenatal care and perinatal health – how to do it better in an urban Indigenous community. th Proceedings of the 6 National Rural Health Conference, Canberra. MATERNAL AND CHILD HEALTH Page 29 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health NSW Aboriginal Maternal and Infant Health Strategy The New South Wales Aboriginal Maternal and Infant Health Strategy began in 2001 with an overall goal of improving the health of Aboriginal women during pregnancy and decreasing perinatal morbidity and mortality. The strategy included targeted antenatal / postnatal programs for Aboriginal women and infants; a state-wide training and support program for midwives and Aboriginal health workers who provided these services; and an evaluation of the pilot program. In five of the six former Area Health Services where the strategy was implemented, a community midwife and Aboriginal health worker team were established to provide community based services for Aboriginal women in conjunction with existing medical, midwifery, paediatric and child and family health staff. The sixth region commenced their program later in response to identified community need. The final evaluation showed that services across the program were provided to 321 women in 2003 and 368 women in 2004. A number of results were documented80: TP PT • births to women aged less than 20 years decreased from 24% in 1996-2000 to 21% in 2003; • the proportion of women attending for their first antenatal care visit before 20 weeks gestation increased significantly from 65% in 1996-2000 to 76% in 2003; • the proportion of women who reported smoking in the second half of their pregnancy decreased from 59% in 1996-2000 to 55% in 2003; • the proportion of women who gave birth to preterm or low birth weight babies was unchanged for women in the program in 2003 compared to 1996-2000; and • the perinatal mortality rate decreased from 20.4 per 1000 live births in 1996-2000 down to 9.4 per 1000 live births in 2003, although this finding was not statistically significant. Strong Mothers, Strong Babies, Strong Culture The Northern Territory Government’s Strong Women, Strong Babies, Strong Culture (SWSBSC) program began in 1993 with the aim of increasing infant birth weights by earlier attendance for antenatal care and improved maternal weight.81 TP PT 79 Ah Chee D, Alley S, Milera S (2001) Congress Alukura – women’s business. Proceedings of the 4th Australian Women’s Health Conference, Adelaide, 19-21 February 2001. 80 NSW Health (2005) NSW Aboriginal Maternal and Infant Health Strategy Evaluation. Available: http://www.health.nsw.gov.au/pubs/2006/evaluation_maternal.html 81 Mackerras 2001 op cit. MATERNAL AND CHILD HEALTH Page 30 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Amongst other results, evaluation has shown twice the increase in birth weight in the three pilot communities compared to non-participating communities (171g compared to 92g). There was also an increase in the proportion of women attending their first antenatal visit in the first trimester of pregnancy. Nganampa Health Council Over many years, Nganampa have run an antenatal program in the Anangu Pitjantjatjara lands of South Australia, also reaching women travelling from neighbouring communities in the Northern Territory and Western Australia. The program aimed to encourage early provision of antenatal care and at least five antenatal care visits for each pregnancy. An independent review82 of the period between 1984 and 1996 found that perinatal mortality rates had decreased dramatically (from 45.2/1000 to 8.6/1000) and that the proportion of babies born of low birth weight decreased from 14.2% to 8.1%. Average birth weight also increased. TP PT Daruk Health Service Western Sydney’s Daruk Health Service has an antenatal clinic which provides home visits, transport to clinics, ultrasound screening, support in labour and postnatal care.83 Since beginning, the program has seen an increase in the number of antenatal visits by local Aboriginal women, as well as a higher proportion presenting earlier in their pregnancy. TP PT Principles for success One of the lessons from the delivery of primary health care services to Indigenous communities in Australia is that what the evidence tells us and what local communities are capable of and want to do, are both important in creating successful programs. If Aboriginal community engagement in the delivery of health services is crucial to their success, equally important is the involvement of policy makers, researchers and health professionals – in short, those who can advise and work with the community of some of the key interventions described above. Many of the programs described in the literature are multifaceted as well as being delivered alongside other programs from both within and outside the primary health care service. Under these conditions it is vain to try to identify a single part of the program that delivers success – or even sometimes, to isolate what part the whole program plays in population level health changes. 82 Sloman D, Shelly J, Watson L, & Lumley J (1999) Obstetric and Child Health Outcomes on the Anangu Pitjantjatjara Lands, 1984–1996: A preliminary analysis. 5th National Rural Health Conference, Adelaide. 83 DOHA (Department of Health and Aged Care) (2001) Better Health Care: Studies in the successful delivery of primary health care services for Aboriginal and Torres Strait Islander Australians. Department of Health and Aged Care, Canberra. MATERNAL AND CHILD HEALTH Page 31 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Despite this, we identify eight key principles for success exemplified by the above programs as follows: 1. Local community engagement with the program, including employment of local Aboriginal people as key service deliverers and planners; 2. A named commitment to a focus on child and maternal health, where efforts are backed from the governance level of the service; 3. A professional multidisciplinary workforce dedicated to the program and supported with the relevant training; 4. Properly resourced, including over time to enable a sustained effort; 5. Good clinical and management systems; 6. Collaboration with other local services (hospitals, Government/nonGovernment health services, other primary health care services) 7. Easily accessible, either through the provision of transport or through outreach and/or home-visiting programs; 8. A space or location set aside for the service and specifically safe for women and children. MATERNAL AND CHILD HEALTH Page 32 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health CHAPTER SUMMARY: MATERNAL AND CHILD HEALTH 1. Maternal and child health services are ‘core business’ for the primary health care sector. Their accessibility, appropriateness and effectiveness are central to the concept of family-centred primary health care. 2. Key areas for primary health care intervention include: a) Predominantly focused on women before and during pregnancy: • Tobacco • Alcohol • Sexual health • Antenatal care • Family planning • Nutrition and folate • Social support and education b) Predominantly focused on the child after birth: • Breastfeeding • Nutrition • Immunisation c) Home visiting: There is strong evidence from overseas that nursing staff visiting pregnant women and young families at home can deliver positive results in the health and development of children. However, design integrity and sustained programs are critical for success. 3. Principles for successful primary health care interventions, include: • Local community engagement, including employment of local Aboriginal people • A commitment to a focus on child and maternal health; • A professional multidisciplinary workforce supported with training; • Proper resourcing to enable sustained effort; • Good clinical and management systems; • Collaboration with other local services; • Accessibility (provision of transport / outreach / home-visiting programs); • A space that is safe (and if possible, separate) for women and children. MATERNAL AND CHILD HEALTH Page 33 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health 3. Education and Health We have seen in the previous section how the health of a mother during pregnancy, and the experience of the infant in utero and through the first years of life can have far-reaching consequences for health over the life course. The first few years of life set children on life trajectories that become progressively more difficult to remedy as social disparities widen and associated cultural reinforcements kick in.84 TP PT We have also seen that, from a child development perspective, health, education and welfare thinking may be focused through different disciplinary lenses but are all essentially about the same set of issues in the early years. Accordingly, a key site for intervention is the education sector, with a voluminous literature showing a strong link between educational attainment and health in later life. Unlike child and maternal health services, interventions to address early educational deficits or to continue a positive educational start to build a healthy platform for life, fall outside even a comprehensive model of primary health. However, the question that needs to be asked is: how can the primary health care sector contribute to the greater effectiveness of the education sector – how can it complete the circuit? In this chapter we will look first at the evidence on the relationship between education outcomes and health outcomes, then following the same path as Chapter Two we will examine the education outcomes for Australian Indigenous children, and examine key intervention points linking health and education, especially at the challenges that this raises for primary health care practice. A Summary of the Evidence The relationship between health and education There is strong evidence linking early childhood development to literacy, social competence and success in school, and in turn, that education attainment is linked to personal health status and socio-economic position later in life. Put at its simplest, those with poor social and health environments at the beginning of their lives are likely to have poor education outcomes, and then poorer health outcomes later in their lives, whether measured by health knowledge, intermediate 84 Shonkoff and Phillips 2000 op cit. EDUCATION AND HEALTH Page 34 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health disease markers, measures of morbidity, general health status, and use of health resources.85 Similarly, improved education can independently override these effects. Writing in this field began in the 1970s with work on the social determinants of health and developing country transitions demonstrating the impact of socio-economic disadvantage at a community and neighbourhood level in terms of poorer health outcomes86. Educational attainment consistently ranked as a key indicator and mediator of such disadvantage. Since then, an extensive literature has developed that demonstrates the links between child development, education and health along the life course: at an individual level, at the level of the family, and of the community. Children who can read and write and numerically calculate are most likely to be longlived, healthy, and have a positive place in society.87 On the other hand, children that are brought up experiencing disadvantaged, neglectful or abusive early childhood development conditions may show antisocial behaviour by the time they enter the school system, and have reduced performance throughout their school years88. Further literature indicates an association between IQ in childhood, and health later in life.89 There are a number of interconnected pathways by which this effect may be expressed. First is the importance of work and class, or socioeconomic status. Education is the key to one’s place in a stratified economy90 where educated children are more likely to grow up into adults with better socioeconomic status which is strongly associated with better health, a greater ability effectively to access health services and lower mortality.91 Second, education is associated with better social-psychological resources: stressors, hardships, beliefs and behaviours are not randomly distributed but are socially structured. The sense of control over one’s own life increases with education, 85 Dewalt D A and Berkman N D (2004) ‘Literacy and health outcomes: a systematic review of the literature’ Journal of General Internal Medicine 19. 86 Caldwell J C (1986) ‘Routes to Low Mortality in Poor Countries’ Population and Development Review 12:171-220; Flegg A T (1982) ‘Inequality of Income, Illiteracy and Medical-Care as Determinants of Infant-Mortality in Underdeveloped-Countries’ Population Studies 36:441-458; Rogers R G and Wofford S (1989) ‘Life Expectancy in Less Developed-Countries – Socioeconomic Development or Public Health’ Journal of Biosocial Science 21:245-252. 87 Mustard 2006 op cit. 88 Tremblay R E (1999) ‘When children’s social development fails’ In Keating D & Hertzman C (Eds.) Developmental health and the wealth of nations: Social, biological, and educational dynamics (pp. 55-71). New York. Guilford. 89 Chandola T, Deary I J, Blane D and Batty G D (2006b) ‘Childhood IQ in relation to obesity and weight gain in adult life: the National Child Development (1958) Study’ International Journal of Obesity 30:1422-1432; Hart C L, Taylor M D, Smith G D, Whalley L J, Starr J M, Hole D J, Wilson V and Deary I J (2004) ‘Childhood IQ and cardiovascular disease in adulthood: prospective observational study linking the Scottish Mental Survey 1932 and the Midspan studies’ Social Science and Medicine 59:2131-8. 90 Ross C E and Wu C (1995) ‘The Links Between Education and Health’ American Sociological Review 60 (5):719745) 91 Hertzman and Wiens 1996 op cit. EDUCATION AND HEALTH Page 35 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health employment and income.92 Some Australian literature points to pathways between educational attainment and impact on the social and emotional well-being of Indigenous peoples.93 TP TP PT PT Third are some of the practical skills that come with better education, allowing individuals to be better able to manage their health (e.g. to access services, comprehend health messages, and advocate on their own behalf).94 Many ‘lifestyle factors’ such as eating well, drinking moderately, not smoking and preventive health care are strongly associated with better education.95 These ‘individual choice’ capacities are enabled by affluence and means, to which education once again contributes. TP T PT T TP PT Fourth there is considerable international literature connecting the educational attainment of parents, in particular the mother, and child health outcomes. In developing countries a clear relationship is found between education of the mother and reduced infant child mortality, which is thought to be related to the greater autonomy and control of women over their lives and the lives of their children.96 In addition, poor maternal education in industrialised countries leads to increased risk of developmental delay for their children.97 TP TP PT PT The Australian Indigenous context A note on the evidence As with other fields noted in this report, there is a general paucity of evidence for ‘what works’ in the Indigenous domain, compounded by an overall lack of solid research and quality evaluation into/of early childhood, parent support and family interventions in Australia.98 Much valuable work remains in the heads of people as practice based wisdom and is not written up. TP PT The majority of efficacy studies come from the United States, as a result of their heavy investment in early intervention programs and theorising in the 1960s and 92 Ross and Wu 1995 op cit; Marmot and Wilkinson 1998 op cit. 93 Corrigan M and Mellor S (2004) The Case for Change: A Review of Contemporary Research on Indigenous Education Outcomes. Australian Council on Educational Research; Hunter B H and Schwab R G (2003) Practical reconciliation and recent trends in Indigenous education. Centre for Aboriginal Economic Policy Research. Available: http://hdl.handle.net/1885/41585. T T HT TH T 94 Berkman N D, DeWalt D A, Pignone M P et al (2004) Literacy And Health Outcomes Evidence report/technology assessment Number 87 prepared for Agency for Healthcare Research and Quality (AHRQ) US Dept Health and Human Services) 95 Ross C E and Wu C L (1996) ‘Education, age, and the cumulative advantage in health’ J Health Soc Behav 37:104-20 96 Caldwell 1986 op cit; Caldwell 1990 op cit; Sandiford P, Cassel J, Montenegro M and Sanchez G (1995) ‘The Impact of Women's Literacy on Child Health and its Interaction with Access to Health Services’ Population Studies 49(1):5-17. T T T T 97 Shonkoff & Phillips 2000 op cit. 98 Herceg 2005 op cit EDUCATION AND HEALTH Page 36 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health 1970s, and equally heavy input of foundations in evaluative research and longitudinal trials. Australia does not have this legacy to draw upon, and the applicability of these overseas interventions to the Australian – and particular the Australian Indigenous – context is a matter of some debate. On the one hand there are those who would argue that only local, grassroots solutions that are developed through appropriately paced action research methods will have a chance of working. On the other, there are arguments that ‘children are children’ wherever they are and the overseas evidence is applicable universally. These two points of view need not be mutually exclusive. In fact we believe the tension between the two can be used creatively with programs designed and implemented locally, based on principles proven to work universally. Central to the success of such an approach is the need for engagement with the community and its capacities, coupled with the critical reflection and robust evaluation of programs. The skills and capacities built up in the health research sector, applied to studies of the link between health and educational outcomes is a productive area for further work – indeed, the exchange of skills between health and education can operate not just at the level of service development and implementation, but also at the level of applied research as well. Aboriginal education Measured by both participation and achievement, Indigenous children in Australia are receiving poorer education than their non-Indigenous counterparts. The nationally agreed literacy and numeracy benchmarks for Years 3, 5 and 7 represent minimum standards of performance below which students will have difficulty progressing satisfactorily at school. In 2001, the preschool participation rate for Indigenous children was 46% compared with 57% by other Australian children, while later in school, the proportions of Indigenous students meeting the national benchmarks for reading and writing were consistently lower than those for other children.99 TP PT From that point on in their life course, and at all levels of measurement, large gaps remain between Indigenous and non-Indigenous students. The most recent National Report to Parliament on Indigenous Education and Training (2006) confirms that while there have been nation-wide improvements in measures of enrolment and retention, overall, achievement gaps that appear in Grade Three tests widen as the student ages. As Indigenous children grow older, the gap widens at a rate of about nine months for every year at school.100 P 99 P AIHW 2005 op cit pxiv 100 Commonwealth of Australia (2006) National Report to Parliament on Indigenous Education and Training, 2004 Australian Government Printer. Canberra. pp 40-45. EDUCATION AND HEALTH Page 37 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health The Western Australia Aboriginal Child Health Survey also reported poor educational outcomes for Indigenous children. Approximately, 57% of Aboriginal children had low academic performance compared with 19% of all children101. TP PT While the developmental education disparities are already evident when Indigenous children enter school and widen from there in the absence of active intervention, the number of Indigenous children accessing child care services remains lower than for non-Indigenous children across Australia.102 In the Northern Territory, an estimated 2000 children who are eligible for preschool or early care and learning programs do not currently access such a service. TP The links between education and health PT TP The recent publication Social determinants of Indigenous health103 summarised the Australian literature on the link between educational attainment and health. According to this study, the causal pathways underlying interactions between Indigenous participation in mainstream education and health outcomes are complex. P P Confirming this, the international research identifies multiple pathways connecting health and education, to the point where one researcher has said it is “one of most powerful relationships in social science, yet it is perhaps the most difficult to explain”.104 P P The difficulty partly lies in the fact that the relationship is bidirectional: health status impacts on the capacity to be educated and vice versa, although there is more evidence that initially, better education lead to better health outcomes (and not automatically the other way around). Additionally, the relationship between education and health is neither static nor linear: life course and cohort processes bear directly upon both domains.105 It is hard to disentangle educational attainment from its links with income and class status. Yet for all this, those with more education have better health for all levels of income, and fewer income-based disparities exist among the well educated than among the less well educated. P P 101 Zubrick S R, Silburn S R, De Maio J A, Shepherd C, Griffin J A, Dalby R B, Mitrou F B, Lawrence D M, Hayward C, Pearson G, Milroy H, Milroy J and Cox A (2006) The Western Australian Aboriginal Child Health Survey: Improving the Educational Experiences of Aboriginal Children and Young People. Curtin University of Technology and Telethon Institute for Child Health Research. 102 OECD (2006) Starting Strong II: Early Childhood Education and Care. Organisation for Economic Cooperation and Development 103 Carson B, Dunbar T, Chenhall R D, and Bailie R (eds.) (2007) Social Determinants of Indigenous Health. Allen and Unwin. U U 104 Lynch S M (2003) ‘Cohort and life-course patterns in the relationship between education and health: A hierarchical approach’ Demography 40:309-331 (p 309) 105 ibid; Ross and Wu 1996 op cit. EDUCATION AND HEALTH Page 38 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health While the evidence from elsewhere is clear on the existence of a fundamental interconnection between health and education (if less clear on the key causal links), there are no publications that clearly demonstrate for Indigenous people in Australia that higher levels of education lead to better health. Similarly, there is limited evidence available on the relationship between maternal education and child health outcomes for Indigenous Australians, despite this being one of the longer standing associations in the international epidemiological literature.106 P P Intervention points for education and health In Chapter Two, regarding maternal and child health, we saw how appropriate care for pregnant women and infants in their first years delivered from the primary health care sector can play a role in building the long-term health of populations. The evidence we have just outlined demonstrates education’s strong positive effect on health throughout life and how, conversely, a poor start in education can become another cumulative disadvantage for a child. This is not about parents who are ‘failing’ – it is about addressing deficits in the environment in which a child grows up. While a number of the health conditions that interrupt learning are addressable within comprehensive primary health care systems conventionally understood, the most important interventions here are likely to be from outside the primary health care sector, and in this section we will briefly outline some of the key interventions which might assist early development and better education for Indigenous children, before turning to the question: what can the primary health care sector – using a ‘familycentred’ approach – contribute? How can it intervene in such a way as to ensure that Aboriginal and Torres Strait Islander children are getting the best education they can, and setting themselves up for a longer, healthier life? Key features of interventions to enhance education outcomes Early intervention / school readiness Early childhood intervention programs (EIPs) aim to provide some protection against the various risk factors that can impact adversely on healthy child development in the years before school entry. The benefits of early intervention for children and their families are well documented. While EIPs are highly varied in their objectives, their targets, and the age of child on 106 Boughton B (2000) What is the Connection Between Aboriginal Education and Aboriginal Health? CRC for Aboriginal and Tropical Health Occasional Paper Series, Issue No 2 2000.; Caldwell J C 1986 op cit. EDUCATION AND HEALTH Page 39 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health which they focus, overall they have been shown to reduce disparities between families107 and their benefits appear to be greatest in populations at “highest-risk”, that is, those characterised by poverty, social isolation, cultural and linguistic diversity, with poor health, educational and social outcomes.108 P P P P Additionally, current evidence suggests that the greatest gains are achieved by intervening early in the life course.109 Programs that intervene in the first six or eight years of life are more successful at improving core developmental outcomes than later interventions. Further, the evidence suggests that the ‘neural sculpting’ of the child’s brain in the first three years is critical and that to have well-educated children it is important not to leave the acquisition of language and familiarity with numbers until the years of formal schooling. Of particular relevance to the Indigenous context, this period is also critical for the acquisition of a second language. Unfortunately, it is also one of the least well-resourced areas of Indigenous social service delivery.110 P P P P Family support and parenting programs Relationships of a child to parents and other care-givers are critical to their healthy development. Strong, caring relationships strengthen the child’s development and while the mother-child relationship is usually the most important, in the Aboriginal context in particular, a number of care-givers may be important to the child. One approach ameliorating the risks faced by a disadvantaged child is to focus on these care-givers with family support and parenting programs. This has been a focus also in the education sector. The evidence is that localized and specific programs focusing on the family and parenting can improve children’s early literacy skills.111 Again, these interventions are varied in scope, target, and objective, and once more the literature is heavily weighted towards overseas examples. P P Structured playgroups and quality child care There is good evidence that, especially for disadvantaged children, access to structured playgroups and quality child care services with an educational component is advantageous in terms of educational achievement. This gain is, however, dependent on the quality of the program and presence of trained staff, including in child care, early childhood educators.112 P 107 Karoly et al 1998 op cit. 108 Olds et al 1997 op cit; Olds et al 1998 op cit. P 109 Carneiro P & Heckman P J (2003) Human Capital Policy. Discussion Paper No.821. The Institute for the Study of Labour (IZA). Bonn. Germany. Available: http://ideas.repec.org/p/iza/izadps/dp821.html 110 A point made in Anderson P and Wild R (2007) Little Children are Sacred: Report of the Northern Territory Board of Inquiry into the Protection of Aboriginal Children from Sexual Abuse. Northern Territory Government. Darwin. 111 Shonkoff and Phillips 2000 op cit 112 Mustard 2006 op cit; Mustard 2006 op cit; Low et al 2005 op cit; Karoly L, Kilburn R, Cannon J (2005) Early Childhood Interventions: proven Results, Future Promise. RAND Corporation Report (www.rand.org) T T EDUCATION AND HEALTH Page 40 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health There is some debate about whether programs targeted at children/families at risk are the best approach compared to universal, population based programs. This often arises in relation to the importance of access to quality child care. One argument is that universal quality child care benefits all children so a population approach will benefit a greater number of at risk children wherever they are located, as well as securing broad societal support.113 Others argue for targeted programs as a way of addressing social and economic disparities in society114, and overcoming the skewed manner of social service provision, with educated and well-off families getting better access to and better quality versions of whatever ‘universal’ programs are on offer. P P P P We would argue that both universal and targeted programs are needed: while some interventions for at risk families and children can have impressive results, the outcomes do not nearly match those of advantaged children who had greater opportunities from the outset115 – and consequently there remains a key political task ‘upstream’ in terms of minimising the social and economic disadvantage of families in the first place. P P Key factors for success Much literature has focused on what family or early childhood interventions are most likely to lead to improved child development and educational attainment. Overall there seem to be some key features of successful programs: 1. Parental involvement – social interventions in the child care arena have greatest chance of beneficial outcomes if they reach the child through the parent. Accordingly, childhood development programs should encourage their voluntary participation, so that parents can simultaneously learn parenting techniques116; P P 2. Content matters – successful programs are not simply a matter of providing good community day care but have a focus on developmental goals117 and attention to the development of cognitive skills including the development of letter and number recognition, pre-reading and language skills118; Programs need to be outcome orientated according to the three key domains of early child development: physical, cognitive and socio-emotional-behavioural; T T P P 113 P P McCain and Mustard 1999 op cit 114 Low M D, Low B J, Baumler E R and Huynh P T (2005) ‘Can education policy be health policy? Implications of research on the social determinants of health’ Journal of Health Politics Policy and Law 30:1131-1162. 115 Hertzman C and Wiens 1996 op cit 116 Mustard 2006 op cit. 117 ibid 118 Low et al 2005 op cit EDUCATION AND HEALTH Page 41 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health 3. Staffing – programs have well-trained staff (preferably four-year trained)119 with low client to staff ratios120; P P P P 4. Be home or centre-based – both can work (including home visiting121) depending on frequent contact with program staff122; P T TP P PT 5. Local and specific – especially for high-risk families facing multiple problems, general parenting and family support programs that are overly general seem to yield little benefit123. Halpern in particular issues some caution regarding so-called comprehensive programming, which often relies on a “vague” system of referral and case management across organizations.124 P P P P Opportunities for a direct primary health care contribution Given this evidence of the link between health and education and the key interventions in this field, what role can primary health care services play to support children and families to maximise educational outcomes? As noted, a child's health is crucial to their participation and success at school. Primary health care programs to ensure that children are healthy and ready to learn while at school are best seen as working integrally with family support programs such as those described above. Nutrition As well as having long-term health implications for healthy development, poor nutrition of infants and preschool children has been shown to affect cognitive function and this can last into the school years125, being specifically associated with delayed motor development, impaired cognition, and poor school performance. Iron deficiency has also been associated with poor cognitive function and delay in psychomotor development, in preschool and young school-age children.126 Anaemia has been found to be very prevalent in some Aboriginal communities, with rates recorded as high as 39% found in some remote communities.127 Iodine deficiency in school children has also been associated with impaired cognitive ability and poor school performance. P P P P 119 Mustard 2006 op cit; Low et al 2005 op cit; Karoly L, et al 2005 op cit 120 Karoly et al 2005 op cit 121 Hertzman and Wiens 1996 op cit. 122 Karoly et al 2005 op cit 123 Shonkoff and Phillips 2000 op cit. P P 124 Halpern, R. (2000) Early childhood intervention for low-income children and families, New York, Cambridge University Press p 377 125 World Health Organisation (WHO) and World Bank (2002) Better Health for poor children. A special report. Available: http://www.who.int/child-adolescent-health/publications/CHILD_HEALTH/WHO_FCH_CAH_02.5.htm HT 126 U UTH ibid 127 Paterson B, Ruben A, Nossar V (1998) ‘School screening in remote Aboriginal communities – results of an evaluation’ ANZ Journal of Public Health 22(6):685-9 EDUCATION AND HEALTH Page 42 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Nutrition and health promotion services have been integrated into family support programs for Indigenous families both here in Australia (the Best Start program in Victoria and Western Australia)128 and overseas (the Aboriginal Head Start program in Canada). The Victorian Department of Health Services ‘2004 Aboriginal Best Start: Status Report’ does not provide a timeline for implementation of the Aboriginal Best Start Demonstration Phases, which were underway when the 2004 report went to print. (Unfortunately, the review team were unable to locate evidence of outcomes of the demonstration phase in either published or unpublished form). In Australia, community based nutrition counseling interventions integrated into primary health care services have been found to have modest benefits in promoting growth amongst children.129 School-based nutrition programs to improve school performance and attendance can distribute healthy meals to students at school as well convey health and nutrition information to the students and their families. The National Aboriginal Community Controlled Health Organisation has called for food supplementation programs to be used as an incentive to school attendance combined with targeted nutritional programs for Aboriginal women in high risk groups.130 A recent review commissioned by OATSIH on effective interventions to improve the social and environmental factors impacting on health noted at the time that there were no nationwide supplementary feeding programs in Australia.131 National programs are of course unusual in school education which is a program area administered by the states and territories. However, since that report went to print, the Australian Government has introduced breakfast programs as part of the suite of emergency measures being introduced in targeted communities in the Northern Territory. The effect of such programs on improved cognition and ability to learn, as opposed to weight gain and such measures as temporarily improved attendance, is unclear. An earlier paper evaluating preschool supplementary meal programs on the nutritional health of Aboriginal children in five New South Wales rural towns used anthropometric measurement and pathology testing. The outcomes were increased 128 Note that the Commonwealth Department of Education Science and Training’s ‘Parent School Partnership Initiatives’ also supports some nutrition projects where the project can be shown to have an effect on school attendance and educational outcomes, particularly literacy and numeracy skills. However, the review team have not been able to source evaluations of such projects. 129 McDonald E, Bailie R, Morris P, Rumbold A & Paterson B (2006) Interventions to Prevent Growth Faltering in Remote Indigenous Communities, Australian Primary Health Care Research Institute, Australian National University, Canberra. 130 NACCHO 2003 What’s needed to improve child health in the Aboriginal and Torres Strait Islander Population. Available: http://www.naccho.org.au/PolicyReports/Reports/ChildHealth.html 131 Black A (2007) Evidence of effective interventions to improve the social and environmental factors impacting on health : informing the development of Indigenous Community Agreements. Department of Health and Ageing. Canberra. Available: http://www.health.gov.au/internet/wcms/publishing.nsf/Content/health-oatsih-pubs -evidence/$FILE/S&E%20Report.pdf EDUCATION AND HEALTH Page 43 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health weight and height, but decreased haemoglobin, vitamin C and ferratin.132 An evaluation of nine projects targeting Indigenous school-age students (ages five to nine) was able to find increased access to nutritious food, attendance and attention in school.133 P P P P Nevertheless, no intervention based on educating disadvantaged families about good nutrition can have a sustained effect where access to nutritious food is non-existent, limited, or expensive. Accordingly, in the Australian Indigenous context – particularly in remote areas – a key primary health care intervention should be to ensure that stores consistently carry nutritious foods priced such that community members can afford to buy them. Hearing health Indigenous children are much more likely than their non-Indigenous peers to have ear disease and hearing problems. Middle ear infections (otitis media) are common, particularly in remote area where the prevalence of otitis media ranges from 40% to 70% compared with only 5% in more advantaged populations internationally.134 Rates of otitis media in Western Australian Aboriginal children aged 5-9 months has been found to be as high as 72%.135 P P P P Hearing loss resulting from middle ear infections is associated with poor school achievement: children who are unable to hear properly are at an obvious disadvantage in the classroom, particularly in acquiring language and reading skills. The problems are exacerbated by the fact that for many, English is not the vernacular or domestic language. Some evidence also suggests that Indigenous children with chronic middle ear disease attend school less frequently than other children.136 P P Primary health care services can contribute in a number of key areas: • infant ear health monitoring and focused treatment before school age; • school-based ear examinations and regular health screenings in schools; • involvement in ensuring that classrooms are designed, constructed and set up to maximise auditory benefit for students. 132 Coyne T, Dowling M and Condon-Paoloni D (1980) ‘Evaluation of preschool meals programmes on the nutritional health of Aboriginal children’ MJA 2:369-375. 133 Miller M, Coffin J, Shaw P, D'Antoine H, Larson A and James R (2004) Evaluation of Indigenous nutrition projects funded by the National Childhood Nutrition Program in Western Australia. Perth. Telethon Institute for Child Health Research, and Combined Universities Centre for Rural Health. T T 134 ABS and AIHW 2005 op cit. 135 Zubrick et al 2004 op cit. 136 ABS and AIHW 2005 op cit. EDUCATION AND HEALTH Page 44 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Developmental Screening A program addressing the needs of children at risk of poor development and educational outcomes needs some way to ‘target’ those children and families. Primary health care services can play a key role in identifying developmental and health problems as they are likely to be a significant point of contact for young children and their families in the early years of a child’s life. The key principles for such screening have been identified as it being voluntary, culturally safe, carried out by trained staff, confidential, and importantly, directed towards identifying children and families who need further assessment, rather than providing a diagnosis.137 Accessible and effective follow up services that are sustainable and well coordinated with screening are also obviously important to the appropriateness of screening strategies. P P Primary health care services can contribute in a number of key areas: • Identification of clinically significant health, emotional or behavioural problems known to contribute to later conduct, learning and peer problems; • Coordination of professional support for pre-school and early childhood teachers to enable at-risk students to access screening and the follow up clinical interventions for medical conditions; and • Engagement of speech pathology and developmental specialists to ensure children with identified speech and language problems arising from hearing and other disorders have access to language enrichment programs. Primary health care as a site for early learning interventions A further question that the above evidence on the importance of early learning opportunity also raises is whether, as well as ensuring the effectiveness of core health service interventions, primary health care sites could also provide direct access on site to structured developmental programs targeting young children and their carers? A number of international models to which we now turn lend weight to the importance of this question. Models for Intervention Benchmark programs that stand out in the literature on early intervention approaches include the Nurse Home Visiting Program (NVHP)—also known as the Elmira 137 Rosman A, Perry D, Hepburn, K (2005) The best beginning: partnerships between PHC and mental health and substance abuse services for young children and their families. US Department of Health and Human Services. EDUCATION AND HEALTH Page 45 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Parent/Early Infancy Project138; the High/Scope Perry Preschool Program; and Early Head Start. There are fewer Australian examples to draw upon which have used experimental designs to determine their effectiveness or published their findings outside internal reports, especially in relation to programs aimed at transition to school. Unfortunately, neither Australian nor Canadian indigenous (Best/Head Start) programs have reported findings. The United States based indigenous Head Start Programs are more rigorous, although this once again throws up the question of transferability.139 P P P P It should be noted that the Nurse Family Partnership Program was reported under the previous chapter on maternal and child health as it is an intervention which targets first time mothers, from within a predominately maternal health perspective. Models from overseas Head Start – United States Beginning in the US in 1965, this early childhood intervention program still exists today with over 1300 Head Start centres located across the country providing services to over 700,000 children. The program is designed to promote healthy development in low-income children from the ages of three to five, with a range of individualized services provided from Head Start preschool centres in the areas of education and early childhood development; medical, dental, and mental health; nutrition; and parent involvement. There have been a number of evaluations which have demonstrated that children who received early childhood intervention from the Head Start program were less likely to spend time in special education programs; more likely to graduate from high school; less likely to be teen mothers; five times less likely to be arrested repeatedly; three times more likely to be home owners. Aboriginal Head Start – Canada 140 P P Established in 1995, the Aboriginal Head Start program aims to enhance healthy child development and school readiness of Indian, Metis and Inuit children living in urban centres and northern communities. The program had its origins in the US Head Start programs, but was adapted to an Indigenous context. 138 Olds et al 1997 op cit; Olds et al 1998 op cit. 139 Marks E L, Moyer M K, Roche M R and Graham E T (2003) A summary of research and publications on Early Childhood for American Indians and Alaska Native Children United States Department of Health and Human Services; Marks E L and Graham E T (2004) Establishing a research agenda for American Indians and Alaska Native Head Start Programs United States Department of Health and Human Services 140 Budgell, R (2002) Aboriginal Head Start Biennial Report 1998/1999 - 1999/2000. Available: www.hc-sc.gc.ca/dca-dea/publications/biennial_e.html EDUCATION AND HEALTH Page 46 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health The primary goal of the initiative is to demonstrate that locally controlled and designed early intervention strategies can provide Aboriginal children with a positive sense of themselves, a desire for learning, and opportunities to develop fully as successful young people. There are 126 Aboriginal Head Start (AHS) sites in communities across Canada. Principles of local control and design are critical to the program which is organized around six components: culture and language, education, health promotion, nutrition, social support, and parental involvement. Health Canada runs the program and partners with not-for-profit providers to deliver a general half-day program operated five days per week. There is no standard curriculum and the evaluation strategies in place are process oriented rather than on the child’s trajectory once they leave the program. Local project evaluations and ad hoc community reporting claim gains in all areas of children's development and improved parenting skills in parents. A National Process and Administrative Evaluation Survey is conducted annually which collects data regarding AHS's team characteristics, project administration and co-ordination, program participants and their communities, the delivery of and strategies and plans associated with program components, program needs and program finances. A National Impact Evaluation is in progress with the aim of demonstrating the impact that AHS is having on the children families and communities participating in AHS.141 P P Perry Preschool ‐ United States The Perry Preschool Study is among the more famous interventions, mostly for its experimental research evaluation (involving randomised control comparisons) and longitudinal follow up on the impact of the program on participants (annually from age 3 to 11 years, and then at ages 14, 15, 19, 27 and most recently 40 years). Perry Preschool combines child development and school readiness programs within the one intervention, targeting children from low-income families who were originally assessed as being at high risk of school failure. There are notable differences in life outcomes between the two groups. As Zubrick et al142 summarise it, those who received the intervention did significantly better on IQ tests at age 5 years, outperformed non-program children on intellectual and language tests from pre-school through to age 7 years, did better on school achievement tests from age 9–14 years and did better on literacy tests at age 19 and 27 years. As adults those who received the intervention did better economically with better employment, higher earnings, higher levels of home ownership and less use of P 141 P See http://www.phac-aspc.gc.ca/dca-dea/programs-mes/ahs_overview_e.html 142 Zubrick et al 2006 p475; see also Schweinhart L J (2006) The High/Scope Perry preschool study through age 40: summary, conclusions and frequently asked questions. High/Scope Educational Research Foundation. EDUCATION AND HEALTH Page 47 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health social services. By the age of 40 years, the group who received the intervention had sustained fewer lifetime arrests and had served significantly less time in prison. Australian Models Best Start ‐ Western Australia and Victoria An Aboriginal Best Start program has been implemented in both Victoria and Western Australia. The ‘DHS 2004 Aboriginal Best Start: Status Report’143 describes the programs as follows: P P The Best Start program in Western Australia was first initiated in 1993 and is a joint project between the Department for Community Development, the Department of Health and the Education Department in Western Australia. The program focuses on Aboriginal children from birth to five years of age, with the aim of improving their wellbeing and life opportunities and preparing them adequately for preschool and the first year of schooling by improving their participation in early childhood education programs. In 1994, on the basis of level of disadvantage and remoteness, six locations were identified as fulfilling the criteria for the Best Start program, and, following consultation, seven communities at these six locations were selected to pilot the program. In subsequent years, other communities became part of the pilot program and in 1996–97 there were 16 sites in operation. All Best Start programs are owned and managed at the local Aboriginal community level. A range of activities is offered through the program, including nutrition programs for parents and carers, an immunization clinic, regular weekly playgroups for young children, as well as cultural camps for children, parents and other significant members of the extended family. In addition, drinking fountains have been installed in communities to provide clean drinking water. While several interim evaluations have been undertaken, the final evaluation noted that the 15 sites operating between September 2000 and February 2001 had provided services to approximately 166 families, with playgroups the most frequently used service. Problems related to the continuing ‘pilot’ status were noted and a recommendation made that this status should be removed to overcome the insecurity it generates among staff, families and communities. Other concerns centred on the adequacy of resources available, the selection, training and support of suitable staff, problems related to the provision of transport and the suitability of venues. 143 Gillam C (2000) Final evaluation of the Best Start pilot: report to the Interdepartmental Steering Committee, Department of Family and Children’s Services, Perth. EDUCATION AND HEALTH Page 48 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health NT mobiles playgroups In 1997 the NT Education Department established a pilot program of visiting playgroups in remote Aboriginal communities, encouraging the involvement of both parents and children in a range of activities based on storytelling, art and craft and also on introducing books and paper. According to the Learning Lessons Report into Aboriginal Education in the NT, children showed increased receptiveness to literacy and classroom activity at age 5 years.144 P P Ngariprlinga’ajirri Early Intervention School Program, Tiwi Islands, NT Adapted from the Victorian Exploring Together program, this program targeted children aged 6-12 years who had demonstrated behavioural problems including self harming behaviour. It provided skills and strategies for parents as well as working with the children. The program’s review reported teacher perceptions of significant improvements in child behaviour, which were sustained at six months, a perception shared by a similar proportion of children.145 P P This program also demonstrated another common feature of such small scale but successful programs, struggling for five years to secure stable funding, rather than the short term pilot program grants that forced program managers and evaluators to spend inordinate amounts of time attending to the business of securing funding, rather than developing and fine-tuning the program.146 P P 144 NT Department of Education (1999), Learning Lessons: An independent review of Indigenous Education in the NT, Darwin 145 Robinson G and Tyler B (2006) Ngaripirlina’ajirri: An early intervention program on the Tiwi Islands: final evaluation report Charles Darwin University, Darwin 146 Robinson G, personal communication EDUCATION AND HEALTH Page 49 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health CHAPTER SUMMARY: HEALTH AND EDUCATION 1. Strong evidence links early childhood development to literacy, social competence and success in school, and in turn to health status later in life. 2. There is an overall lack of solid research and quality evaluation in Australia on early childhood, parent support and family interventions. However, international evidence can provide insights to what can be expected in Australia. 3. Interventions predominantly from outside the primary health care sector include: • school readiness programs, including pre-schools and day care programs with structured pre-school educational curricula and structured playgroups • family support and parenting programs • early intervention programs that incorporate both elements 4. Direct primary health care interventions include in the areas of • nutrition • hearing health • developmental screening • primary health care services as a possible site for early learning interventions 5. Factors for success for these programs include • • parental involvement content that focuses on developmental needs and prepares children for school T T T • well-trained staff with low client to staff ratios • accessibility ( home or centre-based) • local and specific to the needs of the community • Primary health care programs that work integrally with interventions from outside the PHC sector. EDUCATION AND HEALTH Page 50 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health 4. Health and Welfare Child and family welfare is the second of the domains often consigned to the “social determinants of health” to bring forward to a more “core” place in primary health care. In the previous chapter we considered the relationship between health and education. We started with a review of the evidence as to why education and health outcomes are synergistic and of the current state of Aboriginal and Torres Strait Islander education in Australia. We then identified intervention points for improving education outcomes and the implications of these for primary health care practice. Finally we reviewed a number of models that have linked education and health outcomes for disadvantaged children. We will argue that, important though current statutory child protection services are, they are not constructed or equipped to fulfill the wider role of improving family welfare. While it is not practical for primary health care services, schools or child care services to take on the business of statutory forensic child protection, primary health care services (and other social agencies) can play a vital role in family welfare. This role is key to successful child development outcomes that will, in turn, result in better health outcomes across the life course. A summary of the evidence In the literature, definitions of what constitutes family and child welfare vary considerably. However in its broadest sense, child welfare and protection are concerned with preventing trauma or insult to normal childhood development. There are a number of reasons why family and child welfare matters for this report. First there are direct and long term health consequences of family and child welfare. Second, Aboriginal and Torres Strait Islander children are strongly overrepresented in the current child protection systems. Third, we will argue that child protection services in the current environment are unable to provide adequate support to broader child and family welfare, which means input is needed from other sectors, such as primary health care services. The health effects of child abuse and neglect Child abuse and neglect have both direct and indirect health consequences. As well as the immediate effects of abuse and neglect, there are long term impacts on the developing brain and physiology which change developmental structures and pathways, physically and hormonally. HEALTH AND WELFARE Page 51 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Life course risk of chronic disease The leading causes of morbidity and mortality world-wide are related to health behaviours and lifestyle factors. Damaging childhood experiences such as abuse and neglect contribute to the development of these risk factors. Felitti’s critical 1998 study147 compared people who had experienced four or more categories of childhood exposure including physiological, physical, and sexual abuse, or household dysfunction (such as substance abuse, mental illness, domestic violence and criminal activity in the home) with those who had experienced none. It found a four to twelve-fold increased health risk for alcoholism, drug abuse, depression, and suicide attempt; a two to four-fold increase in smoking, poor selfrated health, and increased chance of 50 or more sexual intercourse partners and sexually transmitted disease. In addition, they had a 1.4 to 1.6-fold increase in physical inactivity and severe obesity. P P The number of categories of adverse childhood exposures showed a graded relationship to the presence of adult diseases including ischemic heart disease, cancer, chronic lung disease, skeletal fractures, and liver disease. The seven categories of adverse childhood experiences were strongly interrelated and persons with multiple categories of childhood exposure were likely to have multiple health risk factors later in life. Direct health outcomes from child abuse and neglect The potential consequences of child maltreatment involve long-term health effects and developmental delays. Some of these long-term outcomes result from specific injuries and aggressive actions; other effects result from the absence of positive interactions between parents and their children and the lack of response to a child’s basic physical and emotional needs. Research has also shown the association between child maltreatment and various types of brain injuries particularly in the first 3 years of life148, as well as neuromotor handicaps149, and mental health disorders such as heightened levels of depression, hopelessness and low self-esteem.150 Child and adolescent sexual abuse is also P P P 147 P P P Felitti et al 1998 op cit. 148 Guterman N B (2001) Stopping child maltreatment before it starts: Emerging horizons in early home visitation services. Sage Publications. Thousand Oaks, California. 149 Green A H, Gaines R W & Sandgrund A (1974) ‘Child abuse: pathological syndrome of family interaction’ American Journal of Psychiatry 131(8): 882-886 150 Guterman 2001 op cit HEALTH AND WELFARE Page 52 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health associated with the risk of sexually transmitted diseases151 and post-traumatic stress disorder in childhood and later in adult life.152 P P P P Cognitive and educational attainment Some research studies have found associations between child maltreatment and language deficits, reduced cognitive functioning153 and attention deficit disorders154, which results in poorer retention rates in school and lower school achievement155, which as we have seen in the previous chapter, are also risks for subsequent health outcomes. P P P P P P Social and behavioural development Chalk et al 156 reviewed the evidence on the impact of child maltreatment on social and behavioural development, with two of the most consistent outcomes being antisocial behaviour and physical aggression as well as fear, anger and selfdestructive behaviour. Maltreatment can also have a negative impact on emotional stability and self-regulation, problem solving skills, and the ability to cope with or adapt to new situations which can lead to problems developing trusting relationships. Child sexual abuse is reported as a risk factor for adolescent pregnancy and for getting into trouble with the criminal justice system. P P The Australian Indigenous context Rates of abuse and neglect are obviously a serious concern across the whole population but especially so among Aboriginal and Torres Strait Islander children. In 2005-06, across Australia there were just over 6,000 substantiated cases of abuse or neglect of Indigenous children, a rate of almost 30 cases per 1,000 children – four and a half times the rate amongst non-Indigenous children157. The rates of Indigenous children on care and protection orders were more than 6 times higher than for other children. The rate of Aboriginal and Torres Strait Islander children in out-of-home care was over 7 times the rate of other children.158 P P P P 151 National Research Council (1993) Understanding child abuse and neglect. National Academy Press, Washington DC. 152 Wyatt G E (1992) ‘The sociocultural context of African American and white American women's rape’ Journal of Social Issues 48:77-91 153 Augoustinos M (1987) ‘Developmental effects of child abuse: a number of recent findings’ Child Abuse and Neglect 11:15-27; 154 National Research Council 1993 op cit. 155 Eckenrode J, Laird M, & Doris J (1991) Maltreatment and social adjustment of school children (Grant 90CA1305, National Center on Child Abuse and Neglect). U.S. Department of Health and Human Services. Washington DC. 156 Chalk R, Gibbons A, & Scarupa H J (2002) The Multiple Dimensions of Child Abuse and Neglect :New Insights into an Old Problem. Child Trends Research Brief. Washington DC. 157 AIHW (Australian Institute of Health and Welfare) (2007) Child protection Australia 2005–06. AIHW Cat. no. CWS 28. Canberra, p 27. 158 ibid Table 4.8 HEALTH AND WELFARE Page 53 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Indigenous children are significantly over-represented in most statutory child protection systems and to this extent their issues should be a priority of mainstream child protection services.159 In most jurisdictions, emotional abuse and neglect of Indigenous children formed the great majority of substantiated cases (typically between 70% and 90%, somewhat higher than for the non-Indigenous population), with sexual abuse generally being a serious but relatively small minority of substantiations160. To date, the most comprehensive investigation into Aboriginal child mental health comes from the Western Australian Aboriginal Child Health Survey (WAACHS). Data was collected on 5289 Aboriginal children aged 0-17 living throughout Western Australia and found almost a quarter (24%) of the children surveyed were at a high risk of clinically significant emotional or behavioural difficulties, compared to 15% non-Indigenous children.161 Results of the WAACHS indicated that the strongest predictor of emotional or behavioural problems amongst the children studied was the number of major life stressors experienced by the child’s family in the year prior to interview. Poor quality parenting, poor family functioning, being under the care of a sole parent, or under the care of people other than the biological parent/s, having lived in more than 5 homes since birth and having a primary carer who had had contact with mental health services, were all also significant predictors of mental health problems. Children who were primarily cared for by an adult who had been forcibly removed from their own biological family were found to exhibit poorer outcomes than others in terms of emotional and behavioural problems and drug and alcohol use, illustrating the ongoing harms associated with the ‘stolen generation’. These findings highlight the critical importance of assessing carer health and family factors when considering the mental health of children. It is now generally accepted also that both forced separation and forced relocation have had devastating consequences on Indigenous families in terms of social and cultural dislocation and have impacted on the health and well being of subsequent generations. Recent research evidence has provided scientific quantification for the nature and extent of these intergenerational effects.162 159 Stanley J, Tomison A M & Pocock J (2003) Child abuse and neglect in Indigenous Australian communities. National Child Protection Clearinghouse Issues Paper No.19. Australian Institute of Family Studies. Melbourne. Available: http://www.aifs.gov.au/nch/pubs/newsletters.html 160 AIHW 2007 op cit. p 29 161 Zubrick et al 2004 op cit. 162 Pearson G, Griffin J A, Zubrick S R, Lawrence D M, DeMaio J A, Blair E, Silburn S R, Dalby R B, Cox A, Mitrou F G & Hayward C (2006) ‘The Intergenerational Effects of Forced Separation on the Social and Emotional Wellbeing of Aboriginal Children and Young People’ Family Matters: Newsletter of the Australian Institute of Family Studies 75: 1017. Available: <http://search.informit.com.au/documentSummary;dn=346945332040849;res=E-LIBRARY) HEALTH AND WELFARE Page 54 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Researchers and advocates have argued that child abuse and neglect associated with Indigenous communities cannot be understood, nor addressed, unless it is viewed from a broad perspective which includes both historical and present day issues. Measures centred around community-based responses which empower Indigenous Australians are needed, in order to protect Indigenous children from the serious levels of abuse which they are presently experiencing.163 General risk factors for child maltreatment which can be the result of the historical Indigenous context include low income, substance abuse, mental health problems, intellectual disability and family violence, poor parenting and social isolation.164 P P P P Family welfare or child protection? The argument of those researchers and advocates who argue that addressing child abuse and neglect in Indigenous communities requires a move from an individualistic and investigation driven model toward one that focuses on strengthening families, communities and the environment in which they live reflects a wider analysis of child protection policy and practice.165 P P As noted above, this chapter is mainly concerned with the creation of services complementary to forensic statutory child protection. However, a review of some of the key changes in child protection results provides the context in which these services must be envisaged and developed. Each year the Australian Institute of Health and Welfare (AIHW) collects data on child welfare and protection from the relevant departments in each state and territory on child protection notifications, investigations and substantiations; children on care and protection orders; and children in out-of-home care. However, there is no data at the national level on children who are referred to or who access other services for protective reasons. According to this data: • the number of child protection notifications in Australia has almost doubled from 137,938 in 2001–02 to 266,745 in 2005–06166; P 163 P Stanley et al 2003 op cit. 164 Geeraert L, Van den Noortgate W, Grietens H, & Onghena P (2004) ‘The Effects of Early Prevention Programs for Families with Young Children at Risk for Physical Child Abuse and Neglect: A Meta-Analysis’ Child Maltreatment 9:277-291. 165 See for example: PeakCare Queensland (2007) Rethinking Child Protection: A New Paradigm? PeakCare Discussion Paper No 5 Queensland; Tilbury C (2003) ‘Repeated Reports to Child Protection: Interpreting the data’ Children Australia 28(3); Liddell M, Donegan T, Goddard C & Tucci J (2006) The State of Child Protection: Australian Child Welfare and Child Protection Developments 2005. National Research Centre for the Prevention of Child Abuse, Monash University and Australian Childhood Foundation. Melbourne. 166 AIHW 2007 op cit. Table 2.3 p x HEALTH AND WELFARE Page 55 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health • the number of substantiations in most jurisdictions also increased over the last 5 years; • nationally, the number of children in out-of-home care rose each year from 1996 to 2006; • the numbers of children in care increased by 35% from 18,880 at 30 June 2002 to 25,454 at 30 June 2006;167 and P • P the rates of children in out-of-home care in Australia increased from 3.9 per 1,000 at 30 June 2002 to 5.3 per 1,000 at 30 June 2006.168 P P This dramatic increase in all of the collected indices raises important questions about the reasons for the increases and about the capacity of child protections systems to address the broader needs of children and families, given their current focus on investigative, incident based models. In addressing these questions, the AIHW suggest that169: P P The definition of what constitutes child abuse and neglect has changed and broadened over the last decade. Naturally, any broadening of the definition of child abuse and neglect is likely to result in increasing notifications and substantiations. The focus of child protection in many jurisdictions has shifted away from the identification and investigation of narrowly defined incidents of child abuse and neglect towards a broader assessment of whether a child or young person has suffered harm. This broader approach seeks to assess the child’s protective needs. This explanation reflects the input of State and Territory child protection agencies but may be only a part of the story. Over the same period many States and Territories have experienced crises in their child protection systems with wide media and political coverage of breakdowns and catastrophic outcomes for numbers of children. This has led to a significant increase in investment but also in a lessening of the tolerance of risk, in an environment where child protection professionals are continually having to make difficult risk based decisions about individual families. It is not clear that the extra funding has been applied to a wider range of early intervention and preventive services, at least in proportion to the overall increase in funding. 167 ibid Table 4.3 168 ibid Table 4.7 169 ibid p 6 HEALTH AND WELFARE Page 56 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health As noted there is no national data on the proportion of notifications that lead to non statutory referrals or “other” services. However, one way to evaluate this is to examine the reporting of re-substantiations, that is, the proportion of children who have been the subject of multiple substantiated findings. This is often interpreted as an indication of a failure in child protection practice and systems, although it may also be a measure of the failure to offer the families involved adequate support to continue, or re-establish, parenting. On this point, AIHW cite a report prepared for the Victorian Department of Human Services in 2002170: The study found that key underlying features, such as low income, substance abuse, mental health issues and the burdens of sole parenting, which led to some families coming into contact with child protection systems, were complex and chronic. The child protection system often did not effectively deal with these problems and many children were subject to resubstantiations. The report noted that helping families to deal with these problems required more sustained and less intrusive support than the services usually provided by child protection authorities. It highlighted the need for strengthened prevention and early intervention services as well as improved service responses for children with longer-term involvement in the child protection system.” The final piece of relevant information from child protection collections that supports a shift in the balance toward early intervention and prevention is the kind of abuse or neglect experienced by children in the child protection system (see table). 170 ibid p 7 HEALTH AND WELFARE Page 57 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Emotional abuse and neglect of Indigenous children formed the great majority of substantiated cases.171 However the AIHW report that ‘the high proportion of substantiations of emotional abuse is a relatively new phenomenon … in 1998-99, physical abuse was the most common form’ The reason that this is important is that, while with physical and sexual abuse are somewhat amenable to an incident based investigative model, the damage of emotional abuse and neglect is harder to tie to an incident and is even more often indicative of other health and family issues. The appropriate responses to emotional abuse and neglect are also less often available to child protection authorities as these phenomena even more often result from other health issues in the child’s family (such as mental health and drug and alcohol problems) or from environmental problems (such as poverty or lack of food supply.)172 For example, a critique of Growth Assessment and Action in the Northern Territory was that, in the absence of public health responses to these issues, all it achieved was the removal of Aboriginal children from their families as a result of substantiated findings of neglect.173 171 ibid p 29 172 Liddell et al 2006 op cit. 173 J Vadiveloo, NT NGO child protection expert, personal communication HEALTH AND WELFARE Page 58 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Again, to quote the AIHW report174: P P The changing pattern of type of abuse may be due to the changing characteristics of the families notified. For example, a Victorian study in 2002 showed that in 2001–02, at least 73% of the parents of children in substantiated cases in Victoria had at least one issue or problem such as domestic violence, alcohol or substance abuse or a psychiatric disability. This is a large increase from the 41% of parents that experienced these difficulties in 1996–97. Obviously, the role and work of statutory child protection agencies remains essential. However, it is clear that for Indigenous children especially, given their overrepresentation in the child protection system and the patterns of problems they and their families confront, effective family support interventions are essential. These require action on the part of primary health care and other social services, beyond the limited responsibility to participate in notification and investigation processes. Intervention points for family and child welfare There are a number of ways to categorise possible points of intervention to strengthen family and child welfare. The Gordon Inquiry in WA adopted an ecological framework which attempted to capture the range of factors which can be important: these are represented in the table below.175 P P This approach is broadly consistent with the well accepted application public health framework that distinguishes primary, secondary and tertiary prevention. Primary prevention interventions seek to act on causal factors to prevent the development of problems; secondary prevention interventions act at an early stage on problems that have been established to reverse them or prevent further problems that often result; and tertiary prevention interventions are rehabilitative in focus – seeking to reverse damage done. This model was applied in a 2005 report by the Centre for Health Services Development.176 P 174 P AIHW 2007 op cit p 24 175 Gordon S, Hallahan K & Henry D (2002) Putting the picture together: Inquiry into Response by Government Agencies to Complaints of Family Violence and Child Abuse in Aboriginal Communities. WA Department of Premier and Cabinet. Perth. Available: www.premier.wa.gov.au/feature_stories/gordoninquiryreport.pdf at electronic page 83 176 Eager et al 2005 op cit. HEALTH AND WELFARE Page 59 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Primary level interventions At the first level, primary preventive efforts are aimed at all children and their parents and include efforts to enhance parenting skills and provide children with knowledge and assertiveness training. Parenting programs Parenting programs variously include combinations of information sessions, support groups, home visits and are also sometimes combined with access to quality child care, structured playgroups and other interventions focusing on the child. Shonkoff and Phillips argue that: Generally speaking, programs that offer both a parent and a child component appear to be the most successful in promoting long-term developmental gains for children from low income families.177 P P A high profile example is the Positive Parenting Program (although this program also include tiered levels of intervention including more intensive therapeutic options for families with problems in child behaviour and parental coping.) The program, developed at the University of Queensland and adopted widely in Australia and 177 Shonkoff and Phillips 2000 op cit. p 345 HEALTH AND WELFARE Page 60 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health overseas, has been positively evaluated using RCT standard review and the specific content of each level is manualised with professional training provided.178 P P Child education programs Child education programs aim to provide children with skills to protect themselves. According to a recent systematic review, such programs can increase child disclosure of physical abuse and neglect.179 While there is little evidence that child education programs by themselves can prevent the initiation of abuse, particularly within the family, they have proved most useful in helping to prevent the recurrence of maltreatment by encouraging children to report incidences of abuse. 180 P P P P Welfare reform Primary prevention interventions also seek to change the underlying causes of problems, raising the possibility of welfare reform initiatives making a contribution to family and child welfare by aiming to transition welfare dependent parents to the workforce. A 2004 report that focused on the question of whether and how pilot welfare reform programs launched in five U.S. States – Connecticut, Florida, Indiana, Iowa, and Minnesota – affected children’s developmental outcomes. The report looked first at adult economic outcomes that the programs aimed to change (targeted outcomes), then turned to aspects of young children’s lives – including child care and the home environment – and finally on children themselves.181 It concluded that there was little evidence that these welfare reform programs resulted in either widespread harm or benefit to young school-age children but that they were more likely to have statistically significant impacts on targeted outcomes for adults – employment, earnings, welfare receipt, and income. Positive impacts on children’s functioning appear to be related to increases in family income. Most of the programs showed only a few impacts (given the number of measures examined) on aspects of family life, such as stability or turbulence, parenting, the home environment, and the parent’s psychological well-being. P P 178 Sanders M R (2003) 'The Triple P-Positive Parenting Program: A Universal Population-Level Approach to the Prevention of Child Abuse' Child Abuse Review 12:155-171. For a similarly well evaluated U.S. example see Margolis P A, Stevens R, Bordley W C, Stuart J, Harlan C, Keyes-Elstein L, & Wisseh S (2001) ‘From Concept to Application: The Impact of a Community-Wide Intervention to Improve the Delivery of Preventive Services to Children’ Pediatrics 108(3). 179 Kaplan S J, Pelcovitz D & Labruna V (1999) ‘Child and adolescent abuse and neglect research: a review of the past 10 years. Part I: physical and emotional abuse and neglect’ Journal of the American Academy of Child and Adolescent Psychiatry 38:1214–1222. 180 Kovacs K & Tomison A (2003) ‘An analysis of current Australian program initiatives for children exposed to domestic violence’ Australian Journal of Social Issues 38(4):513-530 181 Tout K, Brooks J, Zaslow M, Redd Z, Moore K, McGarvey A, McGroder S, Gennetian L, Morris P, Ross C & Beecroft E (2004) Welfare Reform and Children: A Synthesis of Impacts in Five States (The Project on State-Level Child Outcomes). U.S. Department of Health and Human Services. Available: www.acf.hhs.gov/programs/opre/welfare_employ/ch_outcomes/index.html. T T HEALTH AND WELFARE Page 61 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Secondary level interventions At the second level, families at risk are offered additional support through home visiting or parent training. Various screening and evaluation methods have been evaluated. In a meta-analysis of 43 studies, early intervention programs were found to reduce the incidence of abusive acts and increase parenting skills and parental social networks. Most programs involved some form of home visiting by professionals or para-professionals.182 P P As noted in Chapter Two, the literature on home visiting is more extensive, including some large-scale randomised controlled trials with long-term follow up, which have demonstrated that home visiting by professionals has benefits for at least specific groups of at-risk families.183 The presence of domestic violence may limit their effectiveness.184 Enhanced home visiting, including specific retraining interventions for mothers, may also be more effective.185 The Triple P program has also been used with higher risk families, with some success186 although as the degree of trauma experienced by children in abusive environments increases, there is a competing school of thought that models such as PPP will be less successful in the long term than therapeutic approaches that directly address the attachment disorders that result from this trauma.187 P P P P P P P P P P According to the CHSD report, available standardised tools for screening for child abuse have limited efficacy. A set of early indicators of child abuse based on clinical experience has consensus support from academics and practitioners in Britain but it is unclear how useful these might be in the Australian context. Tertiary level interventions Tertiary prevention involves minimising harm to children in cases of confirmed abuse. This is the largest and most diverse group of interventions, incorporating various types of therapeutic support for abused children, education or counseling for abusive and non-offending parents, and support for foster parents or the family of origin. 182 Geeraert et al 2004 op cit. 183 For example Armstrong K L, Fraser J A, Dadds M R & Morris J (1999) ‘A randomized, controlled trial of nurse home visiting to vulnerable families with newborns’ Journal of Paediatric Child Health 35:237-244; MacLeod J and Nelson G (2000) ‘Programs for the promotion of family wellness and the prevention of child maltreatment: a metaanalytic review’ Child Abuse and Neglect 24:1127-49; Olds et al 1997 op cit.; Olds et al 1998 op cit. 184 Eckenrode J, Ganzel B, Olds D and Henderson C (2000) ‘Preventing child abuse and neglect with a program of nurse home visitation: The limiting effects of domestic violence’ Journal of the American Medical Association 284:1385-1391 T T TU UT 185 Bugental D B, Lin E K, Rainey B, Kotkotovic A and O'Hara N (2002) ‘A cognitive approach to child abuse prevention’ Journal of Family Psychology 16:243-258. 186 Mondy L & Mondy S (2004) ‘Engaging the community in child protection programmes: the experience of NEWPIN in Australia’ Child Abuse Review 13(6):433-440 187 Cf work of Prof L Newman of NSW Institute of Psychiatry T HEALTH AND WELFARE Page 62 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Examples of tertiary prevention interventions include a variety of intensive family intervention programs. Greater success is reported when professional staff are used to teach parenting skills, focusing on parent-child interactions in the home.188 Other interventions target offenders (to sensitise them to the impacts of their behaviour), non-offending parents (to encourage their support for their children), and support to children in foster care. P P Various therapeutic interventions have been evaluated, including therapeutic child care models, individual cognitive behavioural therapy with children, which evaluated better than child centred therapy in a randomized control trial.189 P P The literature on effectiveness of such interventions is, however, limited because relatively few agencies have attempted to incorporate pre- and post-test comparisons of impacts on participants. More rigorous evaluations, in which control groups are used, follow-up assessments are undertaken, and potentially confounding variables are controlled, are very rare.190 Barriers to quality evaluation include fears by service providers that findings may be negative and threaten future funding, a perception that evaluation diverts scarce resources away from service provision, a lack of evaluation expertise among staff, ethical concerns about issues such as assignment of children to control rather than treatment groups and the short time frame of many programs, which means they are unable to undertake long-term follow-up of participants. P P Also according to the CHSD review of the evidence, cognitive behavioural therapy is effective in reducing trauma among children and parents in cases of confirmed abuse; therapeutic strategies focusing on improving parent-child interactions in families where abuse has occurred have promise; and there is clearly a need for more and better quality evaluations of Australian programs supporting children exposed to domestic violence. Factors for success in interventions There are a number of factors for success in these interventions that have relevance to service collaboration or for their adoption in a primary health care setting. Shonkoff and Phillips point to five key factors: (1) individualisation of service delivery; (2) quality of program implementation; (3) timing, intensity and duration of intervention; (4) provider knowledge, skills 188 Kovacs & Tomison 2003 op cit; Chaffin M, Silovsky J, Funderburk B, Valle L A, Brestan E V, Balachova T et al. (2004) ‘Parent–child interaction therapy with physically abusive parents: Efficacy for reducing future abuse reports’ Journal of Consulting and Clinical Psychology 72:491– 499. 189 Kovacs & Tomison 2003 op cit; Cohen J A, Deblinger E, Mannarino A P & Steer R A (2004) ‘A Multisite Randomized Trial for Children With Sexual Abuse–Related PTSD Symptoms.’ Journal of the American Academy of Child and Adolescent Psychiatry 43:393–402 190 Kovacs & Tomison 2003 op cit. HEALTH AND WELFARE Page 63 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health and relationship with the family and (5) a family-centred, community based coordinated orientation.”191 P P Shonkoff and Phillips also highlighted the benefits of providing interventions that focus on both the child and the parents, often delivered in an environment (such as child care centre) that allows specific attention to the needs of both. Olds’ finding that even well evaluated interventions cannot reliably be successfully replicated in a general way, with attention only to the idea behind the model, is also important. His finding that paraprofessionals delivering a home visiting program designed to be delivered by nurses did not replicate the same outcomes is a salutary lesson.192 P P The benefits of access to high quality child care may be a case in point. In chapter One we made the point that disadvantaged children both stood to gain most from high quality interventions but also stood to lose most when exposed to programs of compromised quality. There may be an exception to this, based on a notion similar to Maslow’s hierarchy of needs. Access to a safe child care environment for children at very high or immediate risk might well provide an immediate preventive gain for those children. However, in general, the evidence is clear that adherence to program integrity and quality indicators is especially important for children at risk of poor developmental outcomes through their family’s poor capacity or dysfunction. Models applied in primary health care A number of these interventions are amenable to delivery through primary health care services and, indeed, there are already examples of Australian primary health care services providing such interventions to Indigenous children. One example is the Early Years Centre in Nerang (Queensland), funded by the Australian Government with the service auspiced by the Benevolent Society and due to start operating later this year. T From the Benevolent Society website – www.bensoc.org.au HTU UTH The Early Years Centre in Nerang on the Gold Coast will provide families who have young children with a parenting 'one stop shop' - somewhere they can access a range of support and services to improve their children's health, well-being and safety. Families in the local area who have children aged 0-8 years will be able to access: 191 Shonkoff and Phillips 2000 op cit. p 360 192 Olds et al 1997 op cit. HEALTH AND WELFARE Page 64 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health - health services for children and mothers - including maternal and child health nurses, breastfeeding support, post-natal clinics, developmental screening and assessments, and specialist clinics such as immunisations and paediatrics. - early childhood care and education - including access to family day care, coordinated playgroups, a toy library, and programs focusing on areas such as transition to school. -family support services - including parenting programs and professional home visiting for families who need a little extra support. parenting information, advice and resources covering a broad range of issues such as child development, behaviour management, parental coping skills, immunisations and nutrition. The Early Years Centre will operate from a central 'Hub' in Nerang and will also provide services from other organisations within the local community. We will also be working in partnership with a number of local organisations. The Centre will be operating from November 2007. In the Indigenous sector, Central Australian Aboriginal Congress was interviewed for this review and explained that their approach has been to successively build such services into their model of comprehensive primary health care. This has included the recruitment of a child development specialist to run the Congress child care centre, the employment of both clinical psychologists and social workers to work with both families and young people, the initiation of a nurse home visiting program and emphasis on a ‘family-centred’ orientation in training of all clinic staff. 193 This last point mirrors a policy commitment made by the NT Department of Health and Community Services to develop a similar ‘family-centred’ orientation in staff of the Department’s remote primary health care centres and a new model of care based on a mix of staff including welfare professionals and para-professionals alongside community nursing staff and Aboriginal Health Workers.194 An independent evaluation of the Coalition of Aboriginal Agencies “Indigenous Families Program”, which focussed on its intensive family preservation work with 25 distressed families in Perth, WA, found a benefit ratio of at least 1.5:1.195 The 193 Ah Chee D and Boffa J, personal communication & Boffa J (2000) Discussion Paper on the role of the Congress Social and Emotional Health Branch. Unpublished paper. Central Australian Aboriginal Congress. Alice Springs. 194 DHCS (Northern Territory Department of Health and Community Services) (2004) Aboriginal Health and Families: A Five Year Framework for Action. DHCS. Darwin. Available: http://www.nt.gov.au/health/comm_health/abhealth_strategy/apact/apacttoc.shtml 195 Mooney G and Dzator J (2003) CAA Indigenous Families Program: An Independent Evaluation. Curtin University, Perth, WA HEALTH AND WELFARE Page 65 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Coalition of Aboriginal Agencies includes the Aboriginal Medical Service in Perth, Derbarl Yerrigan. ‘Little Children are Sacred’ report and response Recommendations and action areas from the recent Little children are sacred report196 included a number focusing on the role of primary health care to address ‘underlying risk factors, and develop functional communities in which children are safe.’ In relation to core education and primary health care services the report recommended: P P • That a maternal and child health home visitation service be established in urban and remote communities as soon as possible; • That there be an increased focus on pre-natal and maternity support leading into early childhood health development for the 0-5 year-old age group; and • That PHC provider roles in protecting children from harm be strengthened by: providing relevant protocols, tools, training and support, including the development of a multidisciplinary training course for PHC providers. The report has also recommended targeted services and programs to support vulnerable and/or maltreated Aboriginal children and their families which are relevant to a primary health care setting. In particular: • That the Aboriginal Medical Services establish family support programs for Aboriginal children and families in urban and remote settings; • The establishment of multi-purpose family centres or “hubs” in remote communities and regional centres to be a focal point for the provision of a range of local and visiting programs; • Expansion of parenting education and parenting skills training for young people. In the 2007 Budget the Australian Government allocated $37.4 million over four years to establish and evaluate sustained nurse home visiting services in Aboriginal primary health care settings, which will allow for the assessment of the effectiveness of a successful intervention in this new context. Specifically, this is aimed at providing regular nurse home visiting services to all women pregnant with an Indigenous child 196 Anderson and Wild 2007 op cit. HEALTH AND WELFARE Page 66 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health in targeted outer regional and remote areas until the child reaches two years of age, and child and family support for at-risk Indigenous children aged 2-8 years.197 P P In addition, the 2007 Budget includes $13.8 million over four years to expand playgroup services for Indigenous families and, most significantly, $23.5 million over four years for improved access to child care and early childhood services, including establishing 20 new child care service hubs in rural and remote communities198.The new Hubs aim to provide integrated early childhood services and complement the early childhood health measure outlined in of the report. Hubs will provide child care services as the core and will link with other local children’s and family services to improve integration of service delivery in the community. For example, a Hub may facilitate a parental education program on site and include a daily nutrition program as part of the child care service. P P The Northern Territory Government has also responded with a number of commitments, and in particular the allocation of $9.6m for the establishment of family centres in remote communities, improved antenatal care and maternal health programs and child care and early education services199. P P Note that another relevant reference point is the national Social and Emotional Well Being Framework 2004-2009.200 One of the frameworks key result areas is Strengthening families to raise healthy, resilient infants, children and young people. The rationale for this is based on evidence that positive mental health outcomes in adults are, to a large extent, determined by health influences and experiences in early childhood.201 Most services however, are aimed at adults. The report recommends support to mothers during pregnancy and immediately following birth in order to contribute to positive learning outcomes and to children being able to meet age-appropriate milestones and to engage in healthy social and family relationships. P P P P Opportunities for a primary health care contribution There would appear to be a number of opportunities for primary health care services to embrace a stronger role in family and child welfare. Possibilities include: 197 Australian Government (2007) Budget 2007-08. Available: http://www.aph.gov.au/budget/200708/bp2/html/expense-16.htm 198 ibid 199 Northern Territory Government (2007) Closing the Gap of Indigenous Disadvantage: Generational Plan of Action. Available: http://www.action.nt.gov.au/fact_sheets/health.shtml U U 200 Social Health Reference Group for National Aboriginal and Torres Strait Islander Health Council and National Mental Health Working Group (2004) Social and Emotional Wellbeing Framework: a National Strategic Framework for Aboriginal and Torres Strait Islander Peoples’ Mental Health and Social and Emotional Well Being. Available: http://www.health.gov.au/internet/wcms/Publishing.nsf/Content/8E8CE65B4FD36C6DCA25722B008342B9/$File/well being.pdf 201 Mrazek P J & Haggerty R J (1994) Reducing Risks for Mental Disorders: Frontiers for Preventive Intervention Research. National Academy Press. Washington DC. HEALTH AND WELFARE Page 67 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health • The provision of family welfare services in settings that families access and which do not carry the stigma of many welfare, especially child protection sites. The example of child care services is often raised and the provision of relevant primary health care services in child care services is one option. Equally health care services are normal places for families to attend. A range of the interventions covered in this chapter can be provided through primary health care services, for example accompanying maternal and infant clinics or specialist paediatric outreach clinics. • Nurse home visiting is another example of a service with multiple service objectives that can be based in primary health care services. It is also worth exploring the possibility of primary health care as a base for parenting interventions, including Triple P type behavioural oriented programs or therapeutic models targeting attachment and trauma issues in parents and children who have been exposed to abuse. • The participation of primary health care services in a number of family preservation programs that work with families where children are at high risk of statutory action has already been trialed in the Aboriginal sector in Australia202, as part of the work of the Coalition of Aboriginal Agencies referred to above. • The role of primary health care in the provision of community mental health and alcohol and drug services is also of obvious importance in building family welfare and resilience and again could be combined with other child and family service interventions. • The role of primary health care services in the organizing of screening and organizing follow up for a range of developmental delay related services. • develop governance and partnership level links with local education and child welfare organisations. 202 Mooney and Dzator 2003 op cit HEALTH AND WELFARE Page 68 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health CHAPTER SUMMARY: HEALTH AND WELFARE 1. Child abuse and neglect have health consequences, including effects on cognitive and educational attainment, a life course risk of chronic disease, and social and behavioural development. 2. There are important questions about the capacity of child protections systems focused on statutory processes to address the broader needs of children and families. 3. Effective family support interventions require action on the part of primary health care services, beyond their responsibility to participate in notification and investigation processes. 4. Possible levels of intervention in child and family welfare: • Primary level interventions aimed at all children and their parents and include parenting programs, child education programs and welfare reform. • Secondary level interventions are aimed at families at risk through home visiting or parent training. • Tertiary level interventions involves minimising harm to children in cases of confirmed abuse, including therapeutic support, education or counseling for parents, and support for foster parents or the family of origin. 5. Factors for success in interventions (from Shonkoff and Philips 2000 p360): • individualisation of service delivery; • quality of program implementation; • timing, intensity and duration of intervention; • provider knowledge, skills and relationship with the family; and • a family-centred, community based coordinated orientation. 6. Opportunities for primary health care services • provision of family welfare services in non-stigmatized settings; • nurse home visiting; • participation in family support programs; • provision of community mental health and alcohol and drug services; and • organisation of screening and follow up for developmental delay related services. • develop governance and partnership level links with local education and child welfare organisations. HEALTH AND WELFARE Page 69 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health 5. Implications for Primary Health Care In the first four Chapters we argued that a child development framework provides the best way to understand the compelling links between the life course health outcomes that start in the early years, education and child and family welfare. We have looked in detail at the evidence about how health is related to education and to welfare and at the experience of service models in each area. In this Chapter it is time to examine the implications of this analysis for the practice of family-centred primary health care. In the next Chapter we will look at how good practice can be “scaled up” to become a system wide intervention. Note that in this Chapter we are not introducing new evidence, but reviewing and summarizing the evidence put forward in Chapters Two, Three and Four. The lessons we have drawn from the material reviewed in these Chapters have implications for family-centred practice. This includes lessons for service design, the scope of practice defined as fitting within primary health care, the way in which health, education and welfare services relate to each other, and about whether there are altogether new models of service that are needed. There are also lessons for the individual professional practice of health and other professionals, for basic and postgraduate training, and for the skills we value within our services. As noted in Chapter One, these lessons apply to clinical practice across the life course, including for the management of chronic disease in adulthood. However this review focuses on the implications for child development, when life course health trajectories are set. In this Chapter we will provide a summary of the conclusions of Chapters One to Four about service redesign and professional practice. We will consider two possible models of implementing family-centred primary health care, based on different assumptions about the degree of institutional reform that is possible. First, assuming an ‘incremental’ change model, what would primary health care services do better or do differently given the evidence outlined in the previous three chapters? Second, turning to a more radical integration of relevant services into a single broader family-centred service, what would such a model look like and how and where could it be established or trialed? These two approaches are not, of course, mutually exclusive. We would argue that strengthening and extending services in the light of the evidence about child development an important part of comprehensive primary health care. We would also IMPLICATIONS FOR PRIMARY HEALTH CARE Page 70 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health suggest that it is important to trial (and, if successful following evaluation, extend) a more radical new model to address Indigenous child disadvantage. This Chapter is focussed on how to make change in the real world. Lessons for family‐centred primary health care During the course of Chapters One to Four we drew a number of conclusions with significance for primary health care practice, most fundamentally the importance of the realisation that health, education and welfare share a common interest in child development. In each discipline we found reference to the same foundational work on the physiological, psychological and cognitive consequences of neural pathway development; the same evidence on the importance of close infant attachment to a consistent parent figure; and we found the same concern about the intergenerational implications of not attending to this evidence. Primary health care services in Indigenous communities in Australia are hugely varied, in terms of provider, location, degree of community engagement, clinical reach, staffing and size. Providers range from the hundred or so community-controlled Aboriginal health services, independently incorporated and funded largely through the Australian Government, to the many State or Territory government run clinics especially in remote areas, to general practitioners whether in private practice or employed by local government agencies. Some services are located in cities, others in regional centres and others may have a dispersed model of a number of separate clinics over huge areas of remote Australia. Some services are large (some of the larger community-controlled services employ well over a hundred staff) with multidisciplinary teams of doctors, nurses, Aboriginal Health Workers and other health and policy staff; some have a small team or even consist of a single individual. This diversity – and the diversity of the populations they serve – makes it impossible to be prescriptive about exactly what a service should provide and how. Nevertheless, Chapters One to Four suggest that health care services are vitally interested in the provision, not only of services they have regarded as their core but also of a wider range of other services core from a wider, child development perspective. In some cases, other sectors will be best placed to provide those services. In some cases health services will be best placed. It is no longer possible, however, for primary health care services to be disinterested in their provision. IMPLICATIONS FOR PRIMARY HEALTH CARE Page 71 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Core services for child development We turn now to recapitulate that range of evidence based services that constitute the wider range of core child development interventions, based on the conclusions of the previous Chapters. These are summarised in the following table, which gives a sense of how the three different sectors – health, education, and welfare – look at the same issues of child development through three different prisms of understanding, and how their services are complementary. Key areas for intervention Primary Health Care Predominantly focused on women before and during pregnancy • Tobacco • Alcohol • Sexual health • Antenatal care • Family planning • Nutrition and folate • Social support and education Education School readiness programs Primary level interventions • • parent information and education programs • child education programs • welfare reform. Pre-schools and day care programs with preschool education curriculum and structured playgroups Family support and parenting programs Early intervention programs that incorporate both the above elements Predominantly focused on the child after birth • Breastfeeding and nutrition • Nutrition • Immunisation Home visiting • Child and Family Welfare Nursing staff visiting pregnant women and young families at home can deliver positive results. However, design integrity and sustained programs are critical for success. IMPLICATIONS FOR PRIMARY HEALTH CARE Secondary level interventions • home visiting or parent training • access to quality child care and playgroup programs • combinations of interventions targeting both parent and child. Tertiary level interventions • therapeutic interventions with children, parents or both • targeted education or counselling for parents • support for foster parents or the family of origin. Page 72 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Role of PHC Primary Health Care Beyond mother and child (working with the reality of Aboriginal family structures) Education Nutrition Hearing health Provision of family welfare services in universally accessed, non-stigmatized settings Developmental screening Validating Indigenous views on child health Beyond standard clinical interventions Primary health care services as a possible site for early learning interventions Sustained nurse home visiting Participation in family support programs Beyond the clinic setting (home visiting and outreach services) Provision of community mental health and alcohol and drug services Working in schools Organisation of screening and follow up for developmental delay related services Working with child protection agencies Principles for successful intervention Child and Family Welfare Local community engagement, including employment A commitment to a focus on child and maternal health A professional multidisciplinary workforce supported with training Parental involvement Content that focuses on developmental needs and prepares children for school Well-trained staff with low client to staff ratios Accessibility (home or centre-based) Proper resourcing to enable sustained effort Local and specific to the needs of the community Good clinical and management systems Primary health care programs work integrally with interventions from outside the PHC sector Collaboration with other local services Individualisation of service delivery Quality of program implementation; Timing, intensity and duration of intervention; Provider knowledge, skills and relationship with the family A family-centred, community based coordinated orientation Accessibility (provision of transport / outreach / home-visiting programs) A space that is safe (and if possible, separate) for women and children. IMPLICATIONS FOR PRIMARY HEALTH CARE Page 73 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Best Practice: primary health care professional practice Moving beyond the question of the scope of family-centred primary health care services, there are also a number of implications of this evidence for the practice of professional staff. These practice skills are, as noted, relevant to the provision of effective familycentred practice across all ages, as well as having a specific salience for the early years. Implementing them is likely to be a matter driven by local capacity and priorities – indeed many of these service extensions require a high degree of skills not specifically provided in the health professions and of engagement with the local community. • Beyond mother and child. Services and professionals within them recognise and work with the reality of Aboriginal family structures to recognise and engage the range of carers, not just the mother. This may include grandmothers, aunts and the older siblings of young children, as well as very importantly male care givers, especially fathers. • Validating Indigenous views on child health. This may include adding to the standard child and maternal health care delivery team to include significant Aboriginal community members (for example, grandmothers and others with traditional responsibility for birthing and child-rearing). • Beyond standard clinical interventions. For example, by providing books, baby massage, and adding their own skills in child and maternal health to other teams, eg at playgroup, child care centre or pre-school. • Beyond the clinic setting. Providing services outside the clinic, particularly regular home visiting but also including providing services in collaboration with other agencies such well as outreach to prisons, schools, childcare and pre-schools and play groups. • Working in schools. As well as providing the usual menu of health screening in local schools and pre-schools, including immunisations and hearing assessments, primary health care services to provide advice on hearing health to schools themselves (including input into acoustic classroom design) as well as adolescent health programs and assistance to young mothers through high schools. • Working with child protection agencies. Includes going beyond the carrying out of statutory obligations of notifying child protection agencies when necessary, to identifying and working with children and families at risk before any direct evidence of abuse or neglect is apparent. It also means staying involved with families that are the subject of child protection investigation and U U IMPLICATIONS FOR PRIMARY HEALTH CARE Page 74 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health action, for example by providing a range of clinical and non-clinical support to the child and the non-offending parent. A new model: child development centres On the evidence we have discussed from Chapters One to Four, there is strong support for primary health care services to: • optimise their own core maternal and child health practice; • become aware and involved in the wider range of service needs that constitute what we have called the child development field; • be prepared to get directly involved in those when needed; and • encourage their individual staff to adopt more family-centred personal professional practice. This would improve the effectiveness of health services, even without any change to the structure of the current child health, education and welfare silos, just through the more effective cooperation and individual professional practice that would arise. However, is this enough? Given the success of more thoroughly integrated early childhood interventions elsewhere, it is arguable that there is a strong case for a trial of such services in a number of Indigenous communities across Australia. Background As we have seen, integrated early childhood interventions for disadvantaged families have been a feature of overseas health and social policy since the 1960s, particularly in the United States with the Head Start program and its derivatives such as the United Kingdom’s Sure Start program. More recently there have been a number of policy frameworks that have encouraged a similar approach in Australia, including Families NSW and Best Start in Western Australia and Victoria, the Early Years Strategy in Queensland, Early Childhood Development Centres in South Australia, and Early Years Integrated Services in Tasmania. Many of these are still at the stage of policy or early implementation, and evaluations though built into the models are not yet available. It remains true that, despite these policy frameworks and the establishment of a few comprehensive integrated early childhood services (for example, Café Enfield in South Australia) integrated early childhood services are not yet an established part of the normal service mix delivered by governments in Australia. IMPLICATIONS FOR PRIMARY HEALTH CARE Page 75 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Partly this may be because the social contract in mainstream Australia over the last thirty years or more has seen the basic infrastructure of education, health, child care and social services become a normal expectation of what Australian governments provide their citizens. Universal, free access to health care is an important difference to the United States system for example. Under these conditions, the pressure to provide a targeted intervention for disadvantaged families, charged with compensating for basic service gaps, has not gained the same momentum and may, paradoxically, have inhibited the same level of innovation in the development of truly integrated service delivery. It is important to note that this is not due to the ‘failure’ of any individual program or professional group or indeed Government, but is the result of the particular social and political contexts in which early childhood care is embedded in Australia. There is also no doubt that complex – not to say sometimes confused – jurisdictional responsibilities have contributed to the delays in taking a successfully integrated approach to early childhood services. However, the conditions that obtain in mainstream Australia have not been mirrored in Indigenous communities, which despite improvements, continue to be marked by poorer access to health services relative to need, and a service infrastructure (including vital services such as schools, sanitation, housing etc) that is often teetering on the point of dysfunction, if not actually dysfunctional. This situation is much more analogous to that which gave rise to the kind of family-centred early childhood interventions that have proven successful in the United States. While the Australian primary health care, education and welfare sectors should continue to pursue their own improvements, the evidence and service models examined in this review suggest that the multiple problems faced by many disadvantaged Indigenous families means that a more radical model is warranted. This would involve the setting up on a trial basis of a number of child development centres, which after evaluation could be extended across Indigenous Australia. Child development centres: key concepts This idea of integrated and holistic early childhood centres is consistent with key recent documents. As we have seen, the Northern Territory Government’s Little Children are Sacred report recommends the establishment multi-purpose family centres203, and the Australian Government’s Indigenous Child Care Services Plan204 (released during the preparation of this report) supports the development of holistic services for Indigenous children, including the development of early childhood service delivery models that promote integration or coordination with other services P P 203 Anderson and Wild 2007 op cit p 26 204 Australian Government 2007b op cit; Australian Government 2007c op cit. IMPLICATIONS FOR PRIMARY HEALTH CARE P P Page 76 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health and where appropriate, integrating or co-locating other government family support services within a child care service hub. In this section, we want to take this further to ask: what would such an integrated model based on early childhood development concepts model look like? First, local conditions, strengths, priorities and skills are crucial in shaping the nature of such centres because intervening in the health, education and welfare of children requires the maximum possible engagement of the community. At the same time these interventions must be based on principles and practices that the evidence can support. For example, one common element to emerge from our review of the evidence in each of the Chapters is the crucial importance of qualified, experienced professional staff. This transformative model is based on combining services from the different sectors that we have outlined in Chapters Two to Four – health, education and welfare – into an integrated service form. These integrated child development centres would combine the relevant budgets and workforces into a single service that responds to both the presenting problems and the underlying factors related to child development and well being. They might include many of the interventions outlined above, for example: • Primary health care – maternal and child health interventions, including interventions in pregnancy, immunisation, nutrition, sexual health and family planning, alcohol, tobacco and other drugs, and social and emotional wellbeing. • Education – school readiness programs, structured playgroups, parenting skills, preschools and quality child care. • Child and family welfare – linking all non-statutory functions, for example therapeutic, early intervention and family support. The key concepts behind this model would include: • A focus on outcomes in health, education and welfare for children up to eight years old; • Involvement of family and community and availability to all families and community members; • Being based in resilient, robust organisations that are well-governed and responsive to local need (whether primary health care service, school, or other organisation) with other services being ‘scaffolded’ onto what they already provide; IMPLICATIONS FOR PRIMARY HEALTH CARE Page 77 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health • A sector-wide approach, involving funds pooling from relevant agencies on a transparent and consistent basis; • Professional management and skilled staff with a combination of generalist and specialist knowledge, and employing local community members as a priority; • Well defined structures for community engagement; • Strong local support for each centre including agreements with other local service providers; and • Evaluation to be built in to the service, with the recognition that many benefits may take some years to emerge and that full cost-benefit analyses are only possible with sustained programs. Such an approach can also expect to face a number of challenges. We would predict, for example, that some attention will need to be given to breaking down the established professional ‘silos’ of health, education and welfare to ensure that they work together (at both an organisational and an individual level). Funds pooling between different areas and levels of Government has also proved in some cases to be complex and sometimes slow, and the widely varying ranges of services available in each locality would also need to be addressed (see ‘Mapping existing services and filling gaps’ in Chapter 6 below). Site selection and funding for trials Site selection for trials would need to take all the above into account, and we would recommend a minimum of six sites being selected in a variety of organisational and geographical contexts (for example, one or two sites each in remote communities, regional centres, and metropolitan areas and the deliberate selection of different service types to host the centres). Trials would need to be for a minimum three years, with a commitment to continue funds pooling at the end of this period pending the results of evaluation. Funding would be needed to plan, develop, establish and evaluate pilot services and might well be needed to supplement existing budgets for existing service gaps. However, these centres should not be dependent on greater funding than would be derived from the combination of standard, adequate funding for each of the service components. IMPLICATIONS FOR PRIMARY HEALTH CARE Page 78 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health CHAPTER SUMMARY: IMPLICATIONS FOR PRIMARY HEALTH CARE 1. Strong common interests unite the fields of child health, education and welfare, which point to a set of common service imperatives. 2. The development of family-centred primary health care should be based on maintaining a clear focus on the development of the child as the key to building health and resilience for life in the early years. 3. Direct implications for the suite of services offered by primary health care services and primary health care professionals include: • optimising their own core maternal and child health practice; • becoming aware and involved in the wider range of service needs that constitute what we have called the child development field; • being prepared to get directly involved in those when needed; and • encouraging their individual staff to adopt more family-centred personal professional practice 4. Primary health care service reform can be pursued as a gradual process, through service development and better coordination between health, education and welfare services. 5. There is a strong argument for piloting a radical model of service integration through the creation of a number of child development centres, providing a range of all these service elements from within one entity IMPLICATIONS FOR PRIMARY HEALTH CARE Page 79 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health 6. Scale Up and Sustainability In Chapter Five we considered the implications of the evidence reviewed for familycentred primary health care. We developed two models: the first based on developing family-centred practice within primary health care without any change to the current service silos in health, education and welfare; and the second based on piloting a number of integrated child development centres. The purpose of this last Chapter is to consider the issue of how either approach can be developed as a reform process across the different jurisdictions and settings where Indigenous families live and in all services, not just those led by an exceptional clinician, manager or community leader. Closely linked to this is the question of sustainability. Too often in Indigenous service delivery we fail to implement on a wider scale the lessons learned from small scale examples of excellent practice. Equally often we fail to sustain excellent practice and innovative services flounder because of workforce or governance crises. It is, of course, essential for building successful systems to have the flexibility to engage with local diversity without losing the essential elements. However, it is important to look beyond the importance of the individual and the local. We need to ask, what are some of the underlying principles for designing, implementing and sustaining successful health intervention programs? Principles of sustainability Models from other developed countries Service sustainability is a challenge that is engaging governments around Australia and across the developed world. The Australian Government has attempted system wide change in early childhood through both policy (Australian Government leadership of the National Agenda for Early Childhood) and through funding programs (Communities for Children). There are also a number of State programs as well including Families NSW and Best Start in Victoria. Two recent reviews cover a range of Government initiatives in Australia and in the UK and North America.205 Common lessons from these reviews included: P 205 P Valentine at al 2007 op cit; Black 2007 op cit. SCALE UP AND SUSTAINABILITY Page 80 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health • The importance of recognising that skilled staff and low child:staff ratios are essential to program success and that there is significant danger of diluting program integrity in replicating models evaluated well elsewhere; • Effective community engagement is important to ensure community acceptance of reform and new service priorities and models and that governance of integrated models is helped if community and client voices are included in governance structures, with effective support for the development of the individuals who take on these onerous roles; • Understanding that these first two objectives especially mean that it is essential to plan to sustain support through the necessarily lengthy time sound program development requires; • Building innovative integrated models onto strong pre-existing infrastructure has multiple advantages. One consideration, highlighted in Valentine et al’s commentary on the UK Sure Start program, is the asymmetry in which kinds of service have the greatest coverage of the population at different ages. Health services tend to be the fastest and most effective at establishing integrated programs for the very young, because all families access them around birth and early in infancy. Schools have a similar advantage later in childhood. Sure Start found health services also spent less time on negotiating the complexity of new arrangements.206 P P • Accepting that professional, disciplinary and service perspectives and priorities will differ, despite common objectives and that, while in theory integration should promote efficiency, integration will involve effort, time, tension and sometimes managing conflict; • While evaluation is essential to service implementation, fine tuning and eventually judging value for money, there are traps in putting too much emphasis on evaluation. These can include data capture demands that are so high they prejudice service provision; forcing innovative models to oversimplify their performance indicators so that they can prove an outcome, even if these are not themselves profound; or being held up to criticism by people hostile to the project because not enough time was allowed for the new model to run its course, or because the evaluation strategy is not sophisticated enough to capture what is actually happening “on the ground.” 206 Valentine et al 2007 op cit p9 & p44; National Evaluation of Sure Start Team (2005), Early Impacts of Sure Start Local Programmes on Children and Families: National Evaluation Report, University of London SCALE UP AND SUSTAINABILITY Page 81 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health • Finally “policy matters”: top-down support from Government can be as important as local engagement to support innovative models to weather the inevitable tensions and problems that real service reform will encounter. Models from international development In the field of international development, the theory and practice of sustainable development is highly developed and an important – if not the most important – consideration in designing and developing new services. We turn now to examine some of the lessons from this field, which also have a number of useful lessons for interventions in Indigenous health within Australia. The concept of sustainable development was first brought into general use through the United Nations’ Report of the World Commission on Environment in 1987, where it was defined as "development which meets the needs of the present without compromising the ability of future generations to meet their own needs”207. P P The concept of sustainable development has been elaborated to include four main areas: economic development, social development, environmental protection, and cultural diversity, the last of these being seen “not simply in terms of economic growth, but also as a means to achieve a more satisfactory intellectual, emotional, moral and spiritual existence"208. P P The concept of sustainable development has also been applied to international development, such that it is generally accepted that all development assistance, apart from temporary emergency and humanitarian relief efforts, should be designed and implemented with the aim of achieving sustainable benefits as a way of reducing the costs of implementation, reducing dependence, and ensuring their longevity. All these factors are applicable to innovation in Indigenous health and social policy and the following principles for sustainable development should be a key part of implementing a family-centred primary health care strategy for Indigenous communities209. P P 1. Participation and ownership. Community members, both men and women, should genuinely participate in design and implementation, and their initiatives and demands should be incorporated into the project. The 207 United Nations Department of Economic and Social Affairs Report of the World Commission on Environment and Development. Available: http://www.un.org/documents/ga/res/42/ares42-187.htm U U 208 UNESCO (United Nations Education Scientific & Cultural Organisation) (2001) Universal Declaration on Cultural Diversity. Available: http://unesdoc.unesco.org/images/0012/001271/127160m.pdf U 209 U AUSAID (Australian Agency for International Development) (2000) Lessons learnt from development projects. U AUSAID. Canberra. U SCALE UP AND SUSTAINABILITY Page 82 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health community should also be involved in monitoring the project and periodically evaluating it for results. 2. Capacity building and training. Employing and training community members as part of the program should begin from the start of any project and continue throughout with the aim of both motivating and transferring skills. 3. Financial. Projects should have secure, long term funding. However, identifying other sources of funding should be encouraged, for example, through partnerships with other non-Government or private organisations. 4. Management and organisation. Programs should be integrated or added to local structures rather than established as new or parallel structures. 5. Social, gender and culture. The introduction of new ideas, technologies and skills requires an understanding of local decision-making systems, gender divisions and cultural preferences. These cannot be assumed to be the same across Indigenous Australia, or even from community to community within a region. 6. External political and economic factors. Projects should not be too complicated or ambitious. 7. Realistic duration. Short projects may be inadequate for solving entrenched problems such as the intergenerational and complex nature of child disadvantage in many Indigenous communities, particularly when behavioural and institutional changes are intended. ‘Scale up’: a system‐wide approach to change Bearing the lessons for sustainable development from both the developed and developing world in mind, how then do we progress making system-wide change of the type we have described in Chapter Five? There are a number of key strategies. The following list cannot be exhaustive – much will depend on the actual process of implementation – but these are the main areas where action is required. Mapping existing services and filling gaps The extent to which Indigenous primary health care services are already delivering on interventions suggested by the evidence is highly variable. A first step, then, would be to survey the extent to which these services are already doing this with a view to identifying deficits and, for services within their core health responsibilities, addressing them. This process could usefully be built onto a quality improvement model, whereby services identifying gaps are supported and as possible resourced) SCALE UP AND SUSTAINABILITY Page 83 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health to fill those gaps to an agreed plan, rather than a model of surveying all health services with a view to possible future resourcing. This may mean a process of working with service providers (Government and community-controlled) on site selection and prioritisation. A process of developing accreditation for Aboriginal primary health care services in meeting the core service requirements of maternal and child health and early childhood development is now underway as a result of a Australian Government 2007 Budget initiative. This could provide a useful vehicle. Workforce Strengthening and extending primary health care services to take account of the evidence in child development will depend to a great extent on the availability of a well-trained, stable and confident workforce that prioritises these services. Priority issues to be addressed would include: • training in the child development approach for primary health care staff and managers; • referral networks and protocols, including information sessions for health professionals on both mandatory reporting in each jurisdiction and the range of other education and welfare services available to complement and support their wider role in these areas and to ensure practice meets those standards; • a renewed effort to reform professional and training structures for those segments of the workforce most critically undersupplied, especially in outer metropolitan, regional and remote areas (such as the various allied health professions); and • recruitment and retention of staff, including accommodation for staff in remote areas. Consideration should be given immediately to how the funds recently made available through the Australian Government’s 2007 Family-Centred Primary Health Care budget initiative can be deployed to address the greatest deficits against the priorities identified in this review. These include, for example, child development experts, early childhood educators, speech pathologists and social workers. This could be pursued through the survey process suggested above (‘Mapping existing services and filling gaps’). As a part of the planning to implement the budget initiative, it would also be warranted to budget for the facilitation and planning processes at service level for staff to redesign ways of working together, allowing for the tensions that have been observed in reviews of other such models. SCALE UP AND SUSTAINABILITY Page 84 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Prioritising child development research Development of best practice requires a solid evidence base. In order to develop this, dedicated research resources need to be made available. Given the importance of a child development approach, the Australian Government should liaise with the National Health and Medical Research Council (NHMRC) regarding the possibility of having a component of the 5% funding quarantined for Aboriginal health research channelled specifically into these areas. Standards setting A number of guidelines for health care service delivery have already been published by the NHMRC. In order to promote a common approach to family-centred primary health care and especially maternal and child health, the Australian Government could sponsor a process for using this child development research advocated to articulate the core services for addressing these within the current evidence through to NHMRC adoption. This could then be expanded to include ‘service extensions’ such as those outlined in Chapter Five. The process already underway to seek NHMRC endorsement of universal Antenatal Guidelines for Australia is both a step toward this and potentially a useful start on which further work could be commissioned. Changing expectations There are (often unspoken) assumptions and institutional barriers to a focussed effort on Indigenous child development perspective. These include, for example, the strength of the three separate approaches and workforces in health, education and welfare, or the belief that failure is built into the system and that disadvantaged people cannot be privileged with high quality services. Breaking down these assumptions and barriers – and fostering a realistic view of what can be achieved based on the evidence – is an important baseline task. The work of Chris Sarra, headmaster at Cherbourg between 1998 and 2004, in which he challenged the students, the school and the parents of this rural Aboriginal community to expect academic outcomes equivalent to other Queensland schools makes this point strongly in the education sector.210 P P We suggest that there a number of critical organisations who, if they agree to a common public stance on these issues can contribute to a much-needed shift in public perception about Indigenous child development. These would include both professional bodies, service provider organisations, sectoral organisations from education and welfare and, importantly Governments. 210 Sarra C (2005) “Armed for success” Griffith Review 11: 187-194 SCALE UP AND SUSTAINABILITY Page 85 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health Policy and community engagement As noted, reviews of previous attempts to pursue sectoral integration require both leadership from Governments and serious engagement with local communities. The Australian Government has a key role to play in both of these objectives. Using this review and a number of other key pieces of work commissioned over the last few years, the Australian Government can play a leadership role in articulating a new policy approach with jurisdictions, for example through the new Child Health and Wellbeing Subcommittee of the Australian Health Ministers’ Advisory Council, and with the Aboriginal community controlled health services organisations. Planning for the implementation of the budget initiative should also include the allocation of resources for the community engagement processes that will be required at key sites, especially the proposed trial child development sites if that model is supported. Evaluation strategy Deciding an evaluation strategy at the outset is a key standard of good practice in program design. The lessons drawn from reviews of similar programs, however, does offer a number of salient lessons about the need to plan this strategy in a realistic way so as not to overburden services with data capture responsibilities; to put significant effort and consult experts in child development fields in the development of evaluation objectives and methods; and to allow sufficient time for results to be delivered before they are evaluated. Next steps: child development centres Strengthening and extending primary health care services on the basis of the evidence is a challenge which, although not without its difficulties, is within the realm of normal practice for health services. This increases in challenge and complexity when it is combined with the creation of new service structures that will require health professionals to work directly with education and welfare professionals. It involves a much greater degree of “going into the unknown.” The following summarise some additional matters worthy of consideration if this proposal is supported. Resourcing the model and sustaining other services Coming to agreements – both at the agency and the local level – about funding models for a trial child development centre is likely to be a complex matter. Key issues here include: SCALE UP AND SUSTAINABILITY Page 86 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health • ensuring the continued sustainability of other services – where some aspect of a local service is to be absorbed into the child development centre, the services residual programs need to continue to be viable; • maintenance of effort in non-trial sites with the ‘incremental’ agenda of strengthening and extending primary health care services; and • providing adequate sustained funding to resource the centre, and a structure for managing and distributing this at the local level. That said, it is important that pilot child development centres are provided additional funding only for establishment and evaluation costs, service deficits against normal expectations and to ensure the viability of both the new entity and any residual service “left behind” in a parent service. It would not be a valid pilot to assess the effectiveness of a new integrated model, if these were the best funded services. We would then be assessing the impact of additional funding, not new approaches. Workforce Once again, workforce is a critical area to be addressed. In setting up new models of service delivery, it is particularly important to train and orient staff into the new model especially given its multidisciplinary nature. Other issues may include Industrial and pay issues; accommodation for staff and incentives for them to reside in remote areas; importance of a local workforce as champions of the service; sourcing of early childhood expertise and leadership. Community engagement Within the parameters of the trial program, engagement with the local community and its services at all levels, and from the earliest moments of the project, is critical. Research and Evaluation As we have seen, high quality evidence for broad-scale interventions in early childhood development is scarce within Australia. It is critical that any trial child development centres are evaluated to a high standard, with close collaboration with the local Aboriginal community. Important issues to be considered include: • defining the outcomes to be measured and the indicators with which to measure them before the onset of the intervention; • providing adequate resourcing for evaluations up front but, as noted, avoiding over elaborating the evaluation so that too much of the initiative’s costs are taken up on evaluation; SCALE UP AND SUSTAINABILITY Page 87 of 101 FAMILY-CENTRED PRIMARY HEALTH CARE Office for Aboriginal and Torres Strait Islander Health • measuring organisational issues such as workforce, funds flow monitoring, information management, and governance, as well as child and family health and well being improvements; • ensuring community perceptions and feedback are a key part of the evaluation; • ensuring comparisons, including of a qualitative nature, between the trial sites are possible in order to identify the key factors for success; and • comparing trial sites with controls. Site selection for trials As noted in Chapter Five, site selection for trials would need to take all of the above matters into account. We would recommend a minimum of six sites being selected in a variety of organisational and geographical contexts (for example, one or two sites each in remote communities, regional centres, and metropolitan areas and centres based in clinics, schools, family and early childhood services.) Trial duration For the reasons outlined above, it is important that any trials would need to be for a minimum of three years, with a commitment to continue funds pooling at the end of this period pending the results of evaluation. CHAPTER SUMMARY: SCALE UP AND SUSTAINABILITY 1. Key areas for action in preparing for implementation – for both the more gradual and integration pilots strategies – include: • a baseline survey of practice, based on a “survey and fix” approach, where issues are addressed as they are identified with services; • workforce development, at a planning level, a policy reform level and with resourcing from the 2007 budget initiative both to high priority professional groups identified in this review and to planning and facilitating change at service level; • research and standard setting activity in indigenous child development, in collaboration with the NHMRC; • policy leadership and community engagement; and • a sophisticated approach to evaluation design, drawing on expertise from the other key child development sectors – education and welfare. 2. 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