care, health and development Child: Original Article
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doi:10.1111/cch.12265
Prioritizing vulnerable children: strategies to address inequity K. Zwi,*† P. Joshua,‡ P. Moran* and L. White*† *Sydney Children’s Hospitals Network, Randwick Campus, Sydney, NSW, Australia †University of New South Wales, Australia, and ‡Department of Paediatrics, Sydney South West Local Health District, Sydney, NSW, Australia Accepted for publication 3 May 2015
Abstract
Keywords child public health, vulnerability to illness Correspondence: Karen Zwi, Community Paediatrician, Head of Department Community Child Health Sydney Children’s Hospitals Network, Randwick Campus Sydney, NSW Australia E-mail: Karen.zwi@health. nsw.gov.au
Background While current strategies to address the needs of vulnerable child populations in Australia aim to reduce inequities, they are isolated, group specific and disparate. Aim The aim of this study was to address health inequities by generating tools that are useful in clinical service settings to assist with the identification, prioritization and monitoring of all vulnerable populations. Methodology Current local and national initiatives to address inequities were reviewed. Shared strategies in delivering health services to vulnerable populations were highlighted, and existing tools used for identification and prioritization were adapted. Findings Analysis of at-risk populations resulted in the formulation of four key questions to identify vulnerable children at presentation to services and strategies for prioritizing children within services. An existing refugee child health service delivery framework was adapted as a proposal for use in the development and evaluation of services for all vulnerable child populations. Conclusion A systemic approach across all vulnerable populations, supplemented by groupspecific measures, is likely to add value to health service delivery as well as be more efficient and sustainable than multiple group-specific interventions. Given the limited outcome evidence available, there is also a need to collect data on vulnerable children and to track the effectiveness of interventions designed to address their health needs.
Background Australian initiatives and policies to address inequities occur on a national, state and local community level. These include the Australian Government Pledge in 2008 to close the gap between Indigenous and non-Indigenous Australians by 2030, the Australian Government’s Social Inclusion Agenda and local strategies to address the needs of specific populations such as children at risk of suffering abuse and neglect, children with poor educational outcomes, children in out-of-home care, refugees and hospital-based chronic care teams for children with disabilities and chronic illnesses.
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Initiatives to address health inequities in vulnerable populations are frequently conceived, implemented and monitored to address group-specific needs. This has benefits in that they are locally driven and developed to address particular cultural and social needs and allow collaboration with relevant key stakeholders. Nonetheless, there are potential gains and added value in formulating shared approaches across all vulnerable groups, as exemplified by sustained homevisiting strategies, which address multiple parent and child vulnerabilities. This approach necessitates overarching strategies to identify vulnerable groups, delivery of effective and
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Table 1. Strategies to address the health needs of vulnerable groups Strategy Universal Systematic population screening to detect conditions that increase vulnerability
Universally applied strategies that are likely to disproportionately benefit vulnerable populations
Reducing disparities by increasing rates of appropriate care for vulnerable populations and decreasing inappropriate care and overuse of resources by others Targeted to vulnerable populations (group specific) Standardized screening and assessment protocols based on evidence and risk status rather than on symptoms Standardized, periodic follow-up utilizing uniform standards and protocols independent of symptoms
Minimize practical and structural barriers to access through proactively promoting access
Instituting focussed strategies specific for vulnerable patients, with a particular focus on access and engagement Active case management
Prioritizing care to vulnerable populations at all levels Focusing on health problems that may worsen existing health inequities
Setting specific disparity reduction targets for key health indicators Employment of staff from vulnerable groups to act as support people and advocates from within the health system Training of staff in mainstream services to address the needs of vulnerable groups in a holistic manner Educate families about accessing health service and health conditions Practice redesign
© 2015 John Wiley & Sons Ltd, Child: care, health and development, 41, 6, 827–835
Example
Newborn hearing screening Developmental and Australian Early Development Index screening Screening for post-natal depression ‘Lift the Lip’ oral health education strategy Education and health literacy programmes Provider–consumer communication strategies (e.g. interpreters and fact sheets) Immunization promotion programmes (e.g. community-wide reminder, recall and outreach) Use of practice guidelines, e.g. for tympanostomy tubes or tonsillectomy, and transition to adult health services for adolescents with chronic conditions Screening all newly arrived refugee children and young people even if asymptomatic Out-of-home care protocols introduced by the NSW Keep Them Safe strategy, which recommends an initial health assessment within 30 days of assumption of care with a subsequent multidisciplinary health assessment followed by periodic reviews Provision of transport or transport subsidies Reducing geographic isolation by providing outreach clinics and community-based services Financial assistance Reducing requirements for referral pathways Flexibility in appointment locations and times, after-hours services and home visiting Appointment reminders Community health/case workers accompanying families to appointments Population-specific strategies Dedicated teams/departments such as community child health teams and sustained nurse home visiting Case manager to facilitate access, assist with compliance, advocate and act as a safety net between primary and tertiary care and between the family and the health system Longer consultations Prioritization in waiting lists Hearing impairment leading to learning difficulties and education failure NSW Aboriginal Ear Health Programme (NSW Ministry of Health 2011) Obesity reduction programmes for communities with high prevalence Dedicated indigenous or bicultural health workers Cultural competence training Patient assertiveness/empowerment training and patient or subpopulation-specific education Use of a chronic care model involving long-term multidisciplinary teams, such as those used for cystic fibrosis, inflammatory bowel disease and diabetes in paediatric centres of excellence
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appropriate health services addressing their needs and evaluation of health outcomes. There are a number of common principles that underpin such strategies, and these could be used for a whole of government and non-governmental agency approach to better health for vulnerable populations. A systemic approach across various vulnerable populations, supplemented by group-specific measures, is likely to be most efficient and sustainable. Given the limited outcome evidence available, there is also a need to collect data on vulnerable children and to track the effectiveness of interventions designed to address their health needs.
Strategies for addressing the health needs of vulnerable children Principles used by services to optimize care for vulnerable populations, as well as to make universal services more accessible, are outlined in Table 1. These include assessment based on population risk status and evidence base (rather than on clinical symptoms), use of standardized population screening, monitoring and follow-up protocols, strategies to ensure equitable access to services, active case management, use of health support workers and training of health staff to better meet the needs of vulnerable populations. While these commonalities can be used to institute system-wide services for vulnerable populations, diverse groups may also require population-specific strategies and programmes to address access barriers.
those needs as a priority. Examples of prioritization strategies include rapid review, dedicated appointments, use of reminders including text messages and transport assistance for clinics. Prioritizing vulnerable children within existing surgical waiting list urgency categories, for example, would result in vulnerable children being seen earliest among children with similar clinical needs.
Concerns about prioritizing vulnerable populations Concerns have been raised about aspects of triaging clinical care on factors other than clinical need (Table 2). These relate to the ethics, practicalities and lack of evidence base for prioritization. While prioritization can have an impact on staff Table 2. Concerns about prioritizing vulnerable populations • Lack of need – ‘we are doing well in child health’ • Reverse discrimination (unfair for non-vulnerable children) • Increased workload • Inadequate tools, e.g. difficult to ask about parental mental illness • Limited evidence of improved outcomes from prioritization • Limited cost effectiveness data • Potential for inappropriate prioritization, e.g. focus on particular groups due to publicity, political imperatives or media attention • Merging of distinct population groups into single population-based approach
Addressing inequity through service prioritization In addition to group-specific interventions, prioritization of all vulnerable populations within existing universal services can reduce health inequity. Prioritization, like triage, is the identification of particular patients for special attention or timely treatment. Whereas triage in acute services such as in emergency departments or in intensive care units is justifiably based on clinical need alone, prioritization in healthcare services can include other criteria such as access and social vulnerability factors. Vulnerable populations have greater difficulties with access, retention, adherence and follow-up. Prioritization enables vulnerable populations to be assessed promptly, meaning that interventions and therapy can be instituted before the development of complications or other adverse outcomes. It allows parents who are balancing competing survival requirements to address their child’s health needs while they perceive
Figure 1. Vulnerable child health service delivery model.
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workload, it is likely to be offset by benefits including reduced non-adherence, non-attendance, loss to follow-up and complications from poor outcomes.
Is prioritization cost effective? A number of prioritization strategies that focus on at-risk populations have been shown to be beneficial, but economic modelling showing cost effectiveness is lacking. Home visiting in high-risk populations is known to lead to improved child development and parent–child interaction and higher immunization rates and decreases the need for welfare, criminal behaviour and child abuse and neglect (Olds et al. 1999; Aslam & Kemp 2005). Fewer pregnancies also enabled women to return to work and become economically self-sufficient. Longer primary care consultations have been found to increase empowerment among socially disadvantaged patients (Mercer et al. 2007). Universally applied strategies may also reduce health costs in the long term by differentially benefitting vulnerable groups. When combined with parenting programmes, preschool for 3-to 4-year-olds can lead to lower rates of obesity and mental health problems (D’Onise et al. 2010). Improvement in equity arguably benefits the entire population in terms of mental health, productivity and economic performance (Wilkinson & Pickett 2009).
Is prioritization ethical and practical? Prioritization is effectively affirmative action for certain sectors of the population, and some consider this to be discriminatory
against those who are better off, take good care of themselves, work hard or pay taxes (Rawls 1971). Some medical ethicists argue, however, that promoting and restoring health are one component of fulfilling our obligation to ensure equal opportunities to all in society (Rid & Biller-Andorno 2009). Hurst asks the question: Is fairness in medicine served better by being blind to patients’ social status in setting clinical priorities, or by attempting to equalise existing health inequalities by giving priority to the socioeconomically disadvantaged at the point of care? (Hurst 2009). The physician’s oath of the World Medical Association states: I will not permit considerations of religion, nationality, race, party politics, or social standing to intervene between my duty and my patient (World Medical Assn 1948). It has been suggested that prioritization may make doctors increasingly aware of the social status of their patients and thereby susceptible to the prejudices prevalent in society. Given the access barriers faced by those in need however, many prioritization strategies effectively amount to assistance in reaching the health ‘starting line’: the waiting lists that are the gateway to services. The Western Canada Waiting List Project, a partnership of 19 health organizations, developed standardized criteria to triage children with mental health presentations and manage waiting lists, which were applied to 817 patients (Smith & Hadorn 2002). When assessing those criteria related to the child’s background as distinct from their clinical presentation, test– retest reliability between staff was poor. This illustrates the difficulty in using some prioritization strategies, which can be sufficiently subjective to lead to inconsistent or inequitable
Table 3. Methods for identification of vulnerable children at presentation Proposed By referring clinician Referrer led advocacy (verbal and written on referral) Standardized referral form with prompts to identify vulnerable populations Prioritization at presentation to health services (by clinician or clerical staff asking about vulnerability status)
Systematic flagging EMR alert system or Medicare card with identification of vulnerability status
Strengths
Risks
• Individualized • Utilizes information available to the referring clinician
• Relies on a subjective assessment • Not reliable • Not applicable for self referrals
• Less stigmatizing for families • Does not require questioning of families at presentation
• Relies on a subjective assessment • Not applicable for self referrals
• Individualized • Allows assessment by staff of risk status as well as appropriateness of referral • Initiates assessment and engages family
• Skill set and training required • Perception that questions may be inappropriate • May be stigmatizing • Relies on client honesty • Privacy issues
• Systemic • Allows automated prioritization mechanisms
• Not individualized • Privacy concerns • Risk status may change
EMR, Electronic medical record.
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prioritization decisions. A qualitative analysis of the use of a prioritization tool for health visitors seeing vulnerable families found that they make their own assessments of risk status based on experience while keeping the suggested checklist in mind (Williams 1997). This non-systematic method of prioritization is likely to be the method used by many clinicians.
In 2010, the Greater Eastern & Southern NSW Child Health Network (one of the three child health networks in NSW) began a project to map current prioritization methods in an urban area health service and analyse the views of service directors, clinicians and intake workers regarding the ethics and practicalities of prioritizing care. While 95% of 21 interviewees
Figure 2. Victorian community health generic priority tool. MBS, Medicare Benefits Schedule, a listing of medical services subsidized by the Australian government; HARP, Hospital Admissions Risk Program developed in the late 1990’s to identify clients at risk of, or already experiencing, frequent emergency presentations or hospital admissions, in order to provide alternative interventions.
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thought it important to prioritize care, they highlighted potential adverse impacts on staff workload, service efficiency and the potential impact on non-vulnerable patients. Only 33% of services had components of a formal system for prioritizing vulnerable children. In other services, prioritization was ad hoc, based on clinical need only, or prioritization was inconsistently applied (P. Moran, personal communication).
In NSW, the Supporting Families Early SAFE START strategic policy identifies families at risk of poor health and well-being outcomes during the perinatal period using a universal approach. This includes psychosocial assessment and depression screening to identify factors that may impact on parenting. A spectrum of support and intervention options is proposed based on the number of risk factors, levels of adversity, strength and resources within each family. The psychosocial assessment tool, which includes
Vulnerable child health service delivery model Table 5. Proposed framework for the delivery of health services to diverse
In order for prioritization strategies to be effective, healthcare providers require an approach to identify, deliver and evaluate services for vulnerable child populations. We propose a vulnerable child health service delivery model, illustrated in Fig. 1 and further explained as follows, which recognizes the common themes across diverse vulnerable populations. It includes the following: 1 Population data collection and identification methods. 2 A health service delivery framework, including prioritization of vulnerable children’s health needs. 3 Evaluation of outcomes and residual health inequities. This could lead to the creation of a periodic vulnerable child report card as a status report on population health inequities in each health region/jurisdiction and could be used as an audit mechanism.
vulnerable populations (adapted from Woodland et al.) 1 Routine comprehensive health screening with standardized, periodic follow-up 2 Co-ordination and case management of initial and ongoing health care 3 Integration of physical, developmental and psychological health care 4 Consumer (e.g. Indigenous/refugee community) participation in service development and monitoring with the use of Indigenous/bicultural workers where appropriate 5 Culturally and linguistically appropriate service provision 6 Inter-sectoral collaboration 7 Accessible and affordable services and treatments with populationspecific approaches 8 Data collection and evaluation to inform evidence-based practice 9 Capacity building and sustainability 10 Advocacy 11 Ongoing identification of those performing poorly on key health and well-being indicators, with group-specific interventions, prioritization strategies and ongoing monitoring to reduce inequity
Population data collection and identification of vulnerable children Identification of vulnerable children by health providers can be difficult, given the problems of privacy, stigma and accuracy. It is, however, one of the primary challenges in addressing health inequities. Identification methods are outlined in Table 3. These can be referrer initiated, at the point of presentation to services, or systematic. Table 4. Concise questions to identify vulnerable groups The following optional questions allow us to provide the most appropriate care for your child: 1 Does your child or either parent/carer identify as an Aboriginal or Torres Strait Islander? 2 Are you a refugee or asylum seeker? 3 Does your child or either parent/carer obtain family support from an agency such as local support services or Anglicare, from disability support services, Department of Housing or family and community services? 4 Does your child or either parent/carer hold a healthcare card or pension card? If so, for what reason? □low income □disability □medical condition □out-of-home care
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Figure 3. Patient/family journey.
Data collection of current waiting list times for vulnerable populations, audit of waiting times for vulnerable children in priority time frame categories of the preceding reporting period, failure to attend rates and comparison with equivalent population data. Reporting of key performance indicators (KPIs) such as the percentage of vulnerable children not operated within their priority time frame category and average waiting time for vulnerable children compared with population waiting times.
Evaluation of outcomes and residual inequities
Vulnerable child report card
Prioritizing vulnerable children within existing surgical waiting list clinical priority time frame (e.g. within 30 days, within 90 days or within 365 days). Strategies to address access issues, e.g. assistance with transport, flexibility with procedure timing and use of reminders. Ensuring availability of interpreters and bicultural health workers.
Social circumstances mean that children from vulnerable populations can have worse outcomes than others with a similar presentation. For example, an Aboriginal child with serous otitis media and hearing loss may progress to academic failure sooner because of other factors compounding the health issues. Use of the identification tool at the time of referral as part of the recommendation for admission paperwork.
Health service delivery framework
Identification of vulnerable child populations
Background
Adenotonsillectomy surgical waiting list
Table 6. Potential applications of a vulnerable child health service delivery model
Reporting of KPIs related to developmental vulnerabilities and developmental outcomes for children from vulnerable population groups.
Ensure availability of interpreters and bicultural health workers. Flexible visit times and locations to minimize barriers to health care. Use of bicultural workers to engage vulnerable families. Use of nurse home visitor as caseworker and advocate. Flexible visit times to minimize barriers to healthcare delivery. Data collection, e.g. child development outcomes and Australian Early Development Index (2012) data.
Strategies to address access issues.
Use of the identification tool at the time of referral by general practitioner or early childhood nurse. At telephone registration and booking, further information can be obtained from the family to screen for risk status. Allocation to prioritized or outreach developmental screening clinic.
Prompt identification of children with developmental delay is important in initiating early intervention services.
Developmental screening clinic
Reporting of health outcome KPIs by which regions/jurisdictions are benchmarked against each other to decrease inequity and improve outcomes (e.g. mortality, admission and disability rates).
Population and service data collection to track progress.
Provision of equitable services using the health service delivery framework.
At registration, using the identification tool. This could occur at the point of first contact with the service and be linked to a medical record number for subsequent presentations.
Regional health jurisdictions have a responsibility for the health of populations in their area, including the adequate provision of services to vulnerable populations.
Local health region/jurisdiction
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seven key questions [lack of support and major stressors in the last 12 months (low self-esteem, history of anxiety, depression or other mental health problems, couple’s relationship problems, adverse childhood experiences and domestic violence)], and the Edinburgh depression score are routinely administered. Multi-agency intake procedures allocate families to appropriate care pathways. This policy is largely applicable to the perinatal period although many of the questions would identify risk factors relevant throughout the life course (NSW Department of Health 2009). The Victorian Government Department of Health’s Community Health Department, in collaboration with the community health sector and other key stakeholders, has developed a set of evidence-based, clinical decision-making tools for prioritizing clients as part of initial needs identification (Victorian Government Health 2009). These consist of a generic prioritization tool (Fig. 2) and discipline-specific clinical tools. They acknowledge the importance of social and other risk factors on health outcomes. We propose four concise questions (Table 4) adapted from the Victorian Community Health tool, to identify vulnerable children. These aim to be minimally invasive and stigmatizing. They can be asked as part of routine demographic information collection at presentation or at referral. They take into account the overlap between many vulnerable population groups and the likely supports in place to assist vulnerable families. It is important when introducing such a tool in that it is reliable and accurate in identifying vulnerable population groups without causing any harm. This will require inter-sectoral data synthesis involving agencies such as health, education, family and community services and Centrelink. The sensitivity and specificity of the tool would need to be established through pilot programmes. Once identification has occurred, strategies to effectively deliver health services can be applied.
framework for the demographics of vulnerable children in need, their health and social morbidity and their access to services is also critical. Data on key health and social indicators will enable service planning and resource allocation, research on the effectiveness of interventions and quality improvement initiatives. Examples of such indicators among each vulnerable population include risk and protective factors (such as immunization rates, obesity rates and exposure to cigarette smoke in the home), socioeconomic and cultural determinants (such as school retention rates) and individual and family health indicators (such as infant mortality, teenage pregnancy rates and rates of self-harm). Collection of data on health and social determinants by vulnerable population status is beyond the reach of most local jurisdictions at present. Existing state and national data sets such as those that measure child poverty (Abello & Harding 2004), child developmental vulnerability (Brinkman et al. 2012) and Australian Institute of Health and Welfare data (2012) are useful to local service planners if broken down by relevant health regions/jurisdictions. Resolving these data challenges would facilitate the issuing of a periodic vulnerable child report card, a status report on progress towards equity for a health region/jurisdiction or service.
Individualized approach Once identified, a patient and family’s healthcare journey can be individualized based on needs and preferences, utilizing the service strategies from the foregoing framework and involving regular review and needs analysis. This is illustrated in Fig. 3.
Potential applications of a vulnerable child health service delivery model
We have adapted a framework originally designed to address the needs of newly arrived refugee children (Table 5) (Woodland et al. 2010). It incorporates many of the universal and targeted strategies, which are currently used by services for group-specific programmes. The elements in the framework can be used to develop services and state or national best practice models for services directed at all vulnerable populations.
In a particular health region/jurisdiction, stakeholders could apply the described vulnerable child health service delivery model to some or all services. The examples outlined in Table 6 represent three quite different domains where the principles may be applied, namely to a surgical waiting list, a developmental clinic and an ‘all of health jurisdiction’ approach. A key driver for some health districts and services may be the introduction of key performance indicators, which monitor decreases in inequity and thus improve health outcomes.
Evaluation of outcomes and residual health inequities
Conclusion
Healthcare jurisdictions have an important role in collecting and monitoring data on the health of their populations. While this is important on a population level, a formal monitoring
It is proposed that a systemic approach that seeks to identify and then prioritize vulnerable groups for access to health services is appropriate and, with commitment, manageable. The proposal
Health service delivery framework for vulnerable children
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includes the use of an identification tool and population data collection to determine the demographics and needs of vulnerable child populations subgroups in the respective jurisdiction. A system of service prioritization could emerge, incorporating aspects of a framework designed to meet the needs of vulnerable children. The results of such innovation could then be evaluated and health outcomes reviewed to restart the cycle of addressing residual health inequities. With appropriate data, a periodic vulnerable child report card could inform a system-wide strategy to meet particular goals in reducing inequities and meet key performance indicators of the health and well-being status of the paediatric population, with specific emphasis on vulnerable children.
Key Messages • The healthcare needs of vulnerable child populations are, overall, poorly addressed. • Tools that assist in systematically collecting, prioritizing and monitoring of all vulnerable populations are required. • Further research is needed to assess the effectiveness of proposed strategies on vulnerable children.
Acknowledgements South Eastern Sydney Local Health District and Sydney Children’s Hospitals Network.
References Abello, A. & Harding, A. (2004) The dynamics of child poverty in Australia. NATSEM Discussion Paper No: 60, Canberra, National Centre for Social and Economic Modelling, University of Canberra. Aslam, H. & Kemp, L. (2005) Home Visiting in South Western Sydney – An Integrative Literature Review, Description and Development of a Generic Model. Centre for Health Equity Training, Research and Evaluation (CHETRE), Sydney. Australian Early Development Index, Royal Children’s Hospital, Melbourne. Downloaded 14/5/2014. http://www.rch.org.au/aedi
Australian Institute of Health and Welfare (2012) A picture of Australia’s children 2012. Cat. no. PHE 167. Canberra. Brinkman, S. A., Gialamas, A. & Rahman A. (2012) Jurisdictional, socioeconomic and gender inequalities in child health and development: analysis of a national census of 5-year-olds in Australia (2012) BMJ Open;2:e001075. doi: 10.1136/bmjopen-2012001075. Community health priority tools. Victorian Government Health Information. Community Health (2009) Downloaded 09.03.2011 from: http://www.health.vic.gov.au/communityhealth/demand/ prioritytools.htm D’Onise, K., Lynch, J. W., Sawyer, M. G. & McDermott, R. A. (2010) Can preschool improve child health outcomes? A systematic review. Social Science & Medicine, 70: 1423–1440. Hurst, S. A.(2009) Just care: should doctors give priority to patients of low socioeconomic status? Journal of Medical Ethics, 35: 7–11. Mercer, S. W., Fitzpatrick, B., Gourlay, G., Vojt, G., McConnachie, A. & Watt, G. C. M. (2007) More time for complex consultations in a high-deprivation practice is associated with increased patient enablement. Br J Gen Pract. 57(545): 960–966. NSW Department of Health/Families NSW, supporting families early: safe start strategic policy, 2009. NSW Aboriginal Ear Health Program Guidelines 2011–2015. Centre for aboriginal health, NSW Ministry of Health 2011. Downloaded 09/11/2011 from: http://www.health.nsw.gov.au/policies/gl/2011/ GL2011_013.html Olds, D. L., Henderson, C. R., Kitzman, H. J., Eckenrode, J. J., Cole, R. E., Tatelbaum, R. C., (1999) Prenatal and infancy home visitation by nurses: recent findings. Future Child, 9(1): 44–65. Rawls, J. (1971) A Theory of Justice, Cambridge. Massachusetts: Harvard University Press. Rid, A. Biller-Andorno, N. (2009) Justice in action? Introduction to the mini symposium on Norman Daniels’ Just Health: Meeting Health Needs Fairly. J Med Ethics, 35(1): 1–2. Smith, D. H., Hadorn, D. C. (2002) Lining up for children’s mental health services: a tool for prioritizing waiting lists. Journal of the American Academy of Child and Adolescent Psychiatry 41(4): 367–376. Wilkinson, R., Pickett, K., (2009) The Spirit Level: Why More Equal Societies Almost Always Do Better. Penguin Publishing. Williams, D. M. (1997) Vulnerable families: a study of health visitors’ prioritization of their work. Journal of Nursing Management, 5: 19–24. Woodland, L. Burgner, D. Paxton, G. Zwi, K.(2010) Health service delivery for newly arrived refugee children: a framework for good practice. Journal of Paediatrics and Child Health, 46: 560–567. World Medical Association. (1948) Declaration of Geneva: physician’s oath. Geneva.
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doi:10.1111/cch.12265
Prioritizing vulnerable children: strategies to address inequity K. Zwi,*† P. Joshua,‡ P. Moran* and L. White*† *Sydney Children’s Hospitals Network, Randwick Campus, Sydney, NSW, Australia †University of New South Wales, Australia, and ‡Department of Paediatrics, Sydney South West Local Health District, Sydney, NSW, Australia Accepted for publication 3 May 2015
Abstract
Keywords child public health, vulnerability to illness Correspondence: Karen Zwi, Community Paediatrician, Head of Department Community Child Health Sydney Children’s Hospitals Network, Randwick Campus Sydney, NSW Australia E-mail: Karen.zwi@health. nsw.gov.au
Background While current strategies to address the needs of vulnerable child populations in Australia aim to reduce inequities, they are isolated, group specific and disparate. Aim The aim of this study was to address health inequities by generating tools that are useful in clinical service settings to assist with the identification, prioritization and monitoring of all vulnerable populations. Methodology Current local and national initiatives to address inequities were reviewed. Shared strategies in delivering health services to vulnerable populations were highlighted, and existing tools used for identification and prioritization were adapted. Findings Analysis of at-risk populations resulted in the formulation of four key questions to identify vulnerable children at presentation to services and strategies for prioritizing children within services. An existing refugee child health service delivery framework was adapted as a proposal for use in the development and evaluation of services for all vulnerable child populations. Conclusion A systemic approach across all vulnerable populations, supplemented by groupspecific measures, is likely to add value to health service delivery as well as be more efficient and sustainable than multiple group-specific interventions. Given the limited outcome evidence available, there is also a need to collect data on vulnerable children and to track the effectiveness of interventions designed to address their health needs.
Background Australian initiatives and policies to address inequities occur on a national, state and local community level. These include the Australian Government Pledge in 2008 to close the gap between Indigenous and non-Indigenous Australians by 2030, the Australian Government’s Social Inclusion Agenda and local strategies to address the needs of specific populations such as children at risk of suffering abuse and neglect, children with poor educational outcomes, children in out-of-home care, refugees and hospital-based chronic care teams for children with disabilities and chronic illnesses.
© 2015 John Wiley & Sons Ltd
Initiatives to address health inequities in vulnerable populations are frequently conceived, implemented and monitored to address group-specific needs. This has benefits in that they are locally driven and developed to address particular cultural and social needs and allow collaboration with relevant key stakeholders. Nonetheless, there are potential gains and added value in formulating shared approaches across all vulnerable groups, as exemplified by sustained homevisiting strategies, which address multiple parent and child vulnerabilities. This approach necessitates overarching strategies to identify vulnerable groups, delivery of effective and
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Table 1. Strategies to address the health needs of vulnerable groups Strategy Universal Systematic population screening to detect conditions that increase vulnerability
Universally applied strategies that are likely to disproportionately benefit vulnerable populations
Reducing disparities by increasing rates of appropriate care for vulnerable populations and decreasing inappropriate care and overuse of resources by others Targeted to vulnerable populations (group specific) Standardized screening and assessment protocols based on evidence and risk status rather than on symptoms Standardized, periodic follow-up utilizing uniform standards and protocols independent of symptoms
Minimize practical and structural barriers to access through proactively promoting access
Instituting focussed strategies specific for vulnerable patients, with a particular focus on access and engagement Active case management
Prioritizing care to vulnerable populations at all levels Focusing on health problems that may worsen existing health inequities
Setting specific disparity reduction targets for key health indicators Employment of staff from vulnerable groups to act as support people and advocates from within the health system Training of staff in mainstream services to address the needs of vulnerable groups in a holistic manner Educate families about accessing health service and health conditions Practice redesign
© 2015 John Wiley & Sons Ltd, Child: care, health and development, 41, 6, 827–835
Example
Newborn hearing screening Developmental and Australian Early Development Index screening Screening for post-natal depression ‘Lift the Lip’ oral health education strategy Education and health literacy programmes Provider–consumer communication strategies (e.g. interpreters and fact sheets) Immunization promotion programmes (e.g. community-wide reminder, recall and outreach) Use of practice guidelines, e.g. for tympanostomy tubes or tonsillectomy, and transition to adult health services for adolescents with chronic conditions Screening all newly arrived refugee children and young people even if asymptomatic Out-of-home care protocols introduced by the NSW Keep Them Safe strategy, which recommends an initial health assessment within 30 days of assumption of care with a subsequent multidisciplinary health assessment followed by periodic reviews Provision of transport or transport subsidies Reducing geographic isolation by providing outreach clinics and community-based services Financial assistance Reducing requirements for referral pathways Flexibility in appointment locations and times, after-hours services and home visiting Appointment reminders Community health/case workers accompanying families to appointments Population-specific strategies Dedicated teams/departments such as community child health teams and sustained nurse home visiting Case manager to facilitate access, assist with compliance, advocate and act as a safety net between primary and tertiary care and between the family and the health system Longer consultations Prioritization in waiting lists Hearing impairment leading to learning difficulties and education failure NSW Aboriginal Ear Health Programme (NSW Ministry of Health 2011) Obesity reduction programmes for communities with high prevalence Dedicated indigenous or bicultural health workers Cultural competence training Patient assertiveness/empowerment training and patient or subpopulation-specific education Use of a chronic care model involving long-term multidisciplinary teams, such as those used for cystic fibrosis, inflammatory bowel disease and diabetes in paediatric centres of excellence
Prioritizing vulnerable children: strategies to address inequity 829
appropriate health services addressing their needs and evaluation of health outcomes. There are a number of common principles that underpin such strategies, and these could be used for a whole of government and non-governmental agency approach to better health for vulnerable populations. A systemic approach across various vulnerable populations, supplemented by group-specific measures, is likely to be most efficient and sustainable. Given the limited outcome evidence available, there is also a need to collect data on vulnerable children and to track the effectiveness of interventions designed to address their health needs.
Strategies for addressing the health needs of vulnerable children Principles used by services to optimize care for vulnerable populations, as well as to make universal services more accessible, are outlined in Table 1. These include assessment based on population risk status and evidence base (rather than on clinical symptoms), use of standardized population screening, monitoring and follow-up protocols, strategies to ensure equitable access to services, active case management, use of health support workers and training of health staff to better meet the needs of vulnerable populations. While these commonalities can be used to institute system-wide services for vulnerable populations, diverse groups may also require population-specific strategies and programmes to address access barriers.
those needs as a priority. Examples of prioritization strategies include rapid review, dedicated appointments, use of reminders including text messages and transport assistance for clinics. Prioritizing vulnerable children within existing surgical waiting list urgency categories, for example, would result in vulnerable children being seen earliest among children with similar clinical needs.
Concerns about prioritizing vulnerable populations Concerns have been raised about aspects of triaging clinical care on factors other than clinical need (Table 2). These relate to the ethics, practicalities and lack of evidence base for prioritization. While prioritization can have an impact on staff Table 2. Concerns about prioritizing vulnerable populations • Lack of need – ‘we are doing well in child health’ • Reverse discrimination (unfair for non-vulnerable children) • Increased workload • Inadequate tools, e.g. difficult to ask about parental mental illness • Limited evidence of improved outcomes from prioritization • Limited cost effectiveness data • Potential for inappropriate prioritization, e.g. focus on particular groups due to publicity, political imperatives or media attention • Merging of distinct population groups into single population-based approach
Addressing inequity through service prioritization In addition to group-specific interventions, prioritization of all vulnerable populations within existing universal services can reduce health inequity. Prioritization, like triage, is the identification of particular patients for special attention or timely treatment. Whereas triage in acute services such as in emergency departments or in intensive care units is justifiably based on clinical need alone, prioritization in healthcare services can include other criteria such as access and social vulnerability factors. Vulnerable populations have greater difficulties with access, retention, adherence and follow-up. Prioritization enables vulnerable populations to be assessed promptly, meaning that interventions and therapy can be instituted before the development of complications or other adverse outcomes. It allows parents who are balancing competing survival requirements to address their child’s health needs while they perceive
Figure 1. Vulnerable child health service delivery model.
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workload, it is likely to be offset by benefits including reduced non-adherence, non-attendance, loss to follow-up and complications from poor outcomes.
Is prioritization cost effective? A number of prioritization strategies that focus on at-risk populations have been shown to be beneficial, but economic modelling showing cost effectiveness is lacking. Home visiting in high-risk populations is known to lead to improved child development and parent–child interaction and higher immunization rates and decreases the need for welfare, criminal behaviour and child abuse and neglect (Olds et al. 1999; Aslam & Kemp 2005). Fewer pregnancies also enabled women to return to work and become economically self-sufficient. Longer primary care consultations have been found to increase empowerment among socially disadvantaged patients (Mercer et al. 2007). Universally applied strategies may also reduce health costs in the long term by differentially benefitting vulnerable groups. When combined with parenting programmes, preschool for 3-to 4-year-olds can lead to lower rates of obesity and mental health problems (D’Onise et al. 2010). Improvement in equity arguably benefits the entire population in terms of mental health, productivity and economic performance (Wilkinson & Pickett 2009).
Is prioritization ethical and practical? Prioritization is effectively affirmative action for certain sectors of the population, and some consider this to be discriminatory
against those who are better off, take good care of themselves, work hard or pay taxes (Rawls 1971). Some medical ethicists argue, however, that promoting and restoring health are one component of fulfilling our obligation to ensure equal opportunities to all in society (Rid & Biller-Andorno 2009). Hurst asks the question: Is fairness in medicine served better by being blind to patients’ social status in setting clinical priorities, or by attempting to equalise existing health inequalities by giving priority to the socioeconomically disadvantaged at the point of care? (Hurst 2009). The physician’s oath of the World Medical Association states: I will not permit considerations of religion, nationality, race, party politics, or social standing to intervene between my duty and my patient (World Medical Assn 1948). It has been suggested that prioritization may make doctors increasingly aware of the social status of their patients and thereby susceptible to the prejudices prevalent in society. Given the access barriers faced by those in need however, many prioritization strategies effectively amount to assistance in reaching the health ‘starting line’: the waiting lists that are the gateway to services. The Western Canada Waiting List Project, a partnership of 19 health organizations, developed standardized criteria to triage children with mental health presentations and manage waiting lists, which were applied to 817 patients (Smith & Hadorn 2002). When assessing those criteria related to the child’s background as distinct from their clinical presentation, test– retest reliability between staff was poor. This illustrates the difficulty in using some prioritization strategies, which can be sufficiently subjective to lead to inconsistent or inequitable
Table 3. Methods for identification of vulnerable children at presentation Proposed By referring clinician Referrer led advocacy (verbal and written on referral) Standardized referral form with prompts to identify vulnerable populations Prioritization at presentation to health services (by clinician or clerical staff asking about vulnerability status)
Systematic flagging EMR alert system or Medicare card with identification of vulnerability status
Strengths
Risks
• Individualized • Utilizes information available to the referring clinician
• Relies on a subjective assessment • Not reliable • Not applicable for self referrals
• Less stigmatizing for families • Does not require questioning of families at presentation
• Relies on a subjective assessment • Not applicable for self referrals
• Individualized • Allows assessment by staff of risk status as well as appropriateness of referral • Initiates assessment and engages family
• Skill set and training required • Perception that questions may be inappropriate • May be stigmatizing • Relies on client honesty • Privacy issues
• Systemic • Allows automated prioritization mechanisms
• Not individualized • Privacy concerns • Risk status may change
EMR, Electronic medical record.
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prioritization decisions. A qualitative analysis of the use of a prioritization tool for health visitors seeing vulnerable families found that they make their own assessments of risk status based on experience while keeping the suggested checklist in mind (Williams 1997). This non-systematic method of prioritization is likely to be the method used by many clinicians.
In 2010, the Greater Eastern & Southern NSW Child Health Network (one of the three child health networks in NSW) began a project to map current prioritization methods in an urban area health service and analyse the views of service directors, clinicians and intake workers regarding the ethics and practicalities of prioritizing care. While 95% of 21 interviewees
Figure 2. Victorian community health generic priority tool. MBS, Medicare Benefits Schedule, a listing of medical services subsidized by the Australian government; HARP, Hospital Admissions Risk Program developed in the late 1990’s to identify clients at risk of, or already experiencing, frequent emergency presentations or hospital admissions, in order to provide alternative interventions.
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thought it important to prioritize care, they highlighted potential adverse impacts on staff workload, service efficiency and the potential impact on non-vulnerable patients. Only 33% of services had components of a formal system for prioritizing vulnerable children. In other services, prioritization was ad hoc, based on clinical need only, or prioritization was inconsistently applied (P. Moran, personal communication).
In NSW, the Supporting Families Early SAFE START strategic policy identifies families at risk of poor health and well-being outcomes during the perinatal period using a universal approach. This includes psychosocial assessment and depression screening to identify factors that may impact on parenting. A spectrum of support and intervention options is proposed based on the number of risk factors, levels of adversity, strength and resources within each family. The psychosocial assessment tool, which includes
Vulnerable child health service delivery model Table 5. Proposed framework for the delivery of health services to diverse
In order for prioritization strategies to be effective, healthcare providers require an approach to identify, deliver and evaluate services for vulnerable child populations. We propose a vulnerable child health service delivery model, illustrated in Fig. 1 and further explained as follows, which recognizes the common themes across diverse vulnerable populations. It includes the following: 1 Population data collection and identification methods. 2 A health service delivery framework, including prioritization of vulnerable children’s health needs. 3 Evaluation of outcomes and residual health inequities. This could lead to the creation of a periodic vulnerable child report card as a status report on population health inequities in each health region/jurisdiction and could be used as an audit mechanism.
vulnerable populations (adapted from Woodland et al.) 1 Routine comprehensive health screening with standardized, periodic follow-up 2 Co-ordination and case management of initial and ongoing health care 3 Integration of physical, developmental and psychological health care 4 Consumer (e.g. Indigenous/refugee community) participation in service development and monitoring with the use of Indigenous/bicultural workers where appropriate 5 Culturally and linguistically appropriate service provision 6 Inter-sectoral collaboration 7 Accessible and affordable services and treatments with populationspecific approaches 8 Data collection and evaluation to inform evidence-based practice 9 Capacity building and sustainability 10 Advocacy 11 Ongoing identification of those performing poorly on key health and well-being indicators, with group-specific interventions, prioritization strategies and ongoing monitoring to reduce inequity
Population data collection and identification of vulnerable children Identification of vulnerable children by health providers can be difficult, given the problems of privacy, stigma and accuracy. It is, however, one of the primary challenges in addressing health inequities. Identification methods are outlined in Table 3. These can be referrer initiated, at the point of presentation to services, or systematic. Table 4. Concise questions to identify vulnerable groups The following optional questions allow us to provide the most appropriate care for your child: 1 Does your child or either parent/carer identify as an Aboriginal or Torres Strait Islander? 2 Are you a refugee or asylum seeker? 3 Does your child or either parent/carer obtain family support from an agency such as local support services or Anglicare, from disability support services, Department of Housing or family and community services? 4 Does your child or either parent/carer hold a healthcare card or pension card? If so, for what reason? □low income □disability □medical condition □out-of-home care
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Figure 3. Patient/family journey.
Data collection of current waiting list times for vulnerable populations, audit of waiting times for vulnerable children in priority time frame categories of the preceding reporting period, failure to attend rates and comparison with equivalent population data. Reporting of key performance indicators (KPIs) such as the percentage of vulnerable children not operated within their priority time frame category and average waiting time for vulnerable children compared with population waiting times.
Evaluation of outcomes and residual inequities
Vulnerable child report card
Prioritizing vulnerable children within existing surgical waiting list clinical priority time frame (e.g. within 30 days, within 90 days or within 365 days). Strategies to address access issues, e.g. assistance with transport, flexibility with procedure timing and use of reminders. Ensuring availability of interpreters and bicultural health workers.
Social circumstances mean that children from vulnerable populations can have worse outcomes than others with a similar presentation. For example, an Aboriginal child with serous otitis media and hearing loss may progress to academic failure sooner because of other factors compounding the health issues. Use of the identification tool at the time of referral as part of the recommendation for admission paperwork.
Health service delivery framework
Identification of vulnerable child populations
Background
Adenotonsillectomy surgical waiting list
Table 6. Potential applications of a vulnerable child health service delivery model
Reporting of KPIs related to developmental vulnerabilities and developmental outcomes for children from vulnerable population groups.
Ensure availability of interpreters and bicultural health workers. Flexible visit times and locations to minimize barriers to health care. Use of bicultural workers to engage vulnerable families. Use of nurse home visitor as caseworker and advocate. Flexible visit times to minimize barriers to healthcare delivery. Data collection, e.g. child development outcomes and Australian Early Development Index (2012) data.
Strategies to address access issues.
Use of the identification tool at the time of referral by general practitioner or early childhood nurse. At telephone registration and booking, further information can be obtained from the family to screen for risk status. Allocation to prioritized or outreach developmental screening clinic.
Prompt identification of children with developmental delay is important in initiating early intervention services.
Developmental screening clinic
Reporting of health outcome KPIs by which regions/jurisdictions are benchmarked against each other to decrease inequity and improve outcomes (e.g. mortality, admission and disability rates).
Population and service data collection to track progress.
Provision of equitable services using the health service delivery framework.
At registration, using the identification tool. This could occur at the point of first contact with the service and be linked to a medical record number for subsequent presentations.
Regional health jurisdictions have a responsibility for the health of populations in their area, including the adequate provision of services to vulnerable populations.
Local health region/jurisdiction
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seven key questions [lack of support and major stressors in the last 12 months (low self-esteem, history of anxiety, depression or other mental health problems, couple’s relationship problems, adverse childhood experiences and domestic violence)], and the Edinburgh depression score are routinely administered. Multi-agency intake procedures allocate families to appropriate care pathways. This policy is largely applicable to the perinatal period although many of the questions would identify risk factors relevant throughout the life course (NSW Department of Health 2009). The Victorian Government Department of Health’s Community Health Department, in collaboration with the community health sector and other key stakeholders, has developed a set of evidence-based, clinical decision-making tools for prioritizing clients as part of initial needs identification (Victorian Government Health 2009). These consist of a generic prioritization tool (Fig. 2) and discipline-specific clinical tools. They acknowledge the importance of social and other risk factors on health outcomes. We propose four concise questions (Table 4) adapted from the Victorian Community Health tool, to identify vulnerable children. These aim to be minimally invasive and stigmatizing. They can be asked as part of routine demographic information collection at presentation or at referral. They take into account the overlap between many vulnerable population groups and the likely supports in place to assist vulnerable families. It is important when introducing such a tool in that it is reliable and accurate in identifying vulnerable population groups without causing any harm. This will require inter-sectoral data synthesis involving agencies such as health, education, family and community services and Centrelink. The sensitivity and specificity of the tool would need to be established through pilot programmes. Once identification has occurred, strategies to effectively deliver health services can be applied.
framework for the demographics of vulnerable children in need, their health and social morbidity and their access to services is also critical. Data on key health and social indicators will enable service planning and resource allocation, research on the effectiveness of interventions and quality improvement initiatives. Examples of such indicators among each vulnerable population include risk and protective factors (such as immunization rates, obesity rates and exposure to cigarette smoke in the home), socioeconomic and cultural determinants (such as school retention rates) and individual and family health indicators (such as infant mortality, teenage pregnancy rates and rates of self-harm). Collection of data on health and social determinants by vulnerable population status is beyond the reach of most local jurisdictions at present. Existing state and national data sets such as those that measure child poverty (Abello & Harding 2004), child developmental vulnerability (Brinkman et al. 2012) and Australian Institute of Health and Welfare data (2012) are useful to local service planners if broken down by relevant health regions/jurisdictions. Resolving these data challenges would facilitate the issuing of a periodic vulnerable child report card, a status report on progress towards equity for a health region/jurisdiction or service.
Individualized approach Once identified, a patient and family’s healthcare journey can be individualized based on needs and preferences, utilizing the service strategies from the foregoing framework and involving regular review and needs analysis. This is illustrated in Fig. 3.
Potential applications of a vulnerable child health service delivery model
We have adapted a framework originally designed to address the needs of newly arrived refugee children (Table 5) (Woodland et al. 2010). It incorporates many of the universal and targeted strategies, which are currently used by services for group-specific programmes. The elements in the framework can be used to develop services and state or national best practice models for services directed at all vulnerable populations.
In a particular health region/jurisdiction, stakeholders could apply the described vulnerable child health service delivery model to some or all services. The examples outlined in Table 6 represent three quite different domains where the principles may be applied, namely to a surgical waiting list, a developmental clinic and an ‘all of health jurisdiction’ approach. A key driver for some health districts and services may be the introduction of key performance indicators, which monitor decreases in inequity and thus improve health outcomes.
Evaluation of outcomes and residual health inequities
Conclusion
Healthcare jurisdictions have an important role in collecting and monitoring data on the health of their populations. While this is important on a population level, a formal monitoring
It is proposed that a systemic approach that seeks to identify and then prioritize vulnerable groups for access to health services is appropriate and, with commitment, manageable. The proposal
Health service delivery framework for vulnerable children
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includes the use of an identification tool and population data collection to determine the demographics and needs of vulnerable child populations subgroups in the respective jurisdiction. A system of service prioritization could emerge, incorporating aspects of a framework designed to meet the needs of vulnerable children. The results of such innovation could then be evaluated and health outcomes reviewed to restart the cycle of addressing residual health inequities. With appropriate data, a periodic vulnerable child report card could inform a system-wide strategy to meet particular goals in reducing inequities and meet key performance indicators of the health and well-being status of the paediatric population, with specific emphasis on vulnerable children.
Key Messages • The healthcare needs of vulnerable child populations are, overall, poorly addressed. • Tools that assist in systematically collecting, prioritizing and monitoring of all vulnerable populations are required. • Further research is needed to assess the effectiveness of proposed strategies on vulnerable children.
Acknowledgements South Eastern Sydney Local Health District and Sydney Children’s Hospitals Network.
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