Child Malnutrition and fail to thrive report
Child Malnutrition / Failure to Thrive Project 2008
Final report
Project Officer - Susan Grant
1. Acknowledgements
The Project Officer wishes to acknowledge the CM/FTT Steering Committee and all the staff from government and non-government agencies who contributed their time and thought to the project. A big thank you to all the hard working staff of the Paediatric Ward at ASH. A particular thank you to Nettie Flaherty, Carmel Hattch, Valmai McDonald, Clare MacVicar, Rob Roseby and Andrew White for their expertise and kind support. Thank you also to Mick Arundell for his time and technical expertise and to Cara Malzinskas for her patient data entry. It is hoped that this project will make a contribution to efforts to improve the care for children and families experiencing CM/FTT.
Alice Springs Hospital
( Department of Health and Families, Northern Territory 2008.
This publication is copyright. The information in this report may be freely copied and distributed for
• non-profit purposes such as study, research, health service management and public information subject to the inclusion of an acknowledgement of the source. Reproduction for other purposes requires the written permission of the Chief Executive of the Department of Health and Families, Northern Territory.
Printed by the Government Printer of the Northern Territory, 2008.
An electronic version is available at: .au/health/
General enquiries about this publication should be directed to:
CEO Alice Springs Hospital
Department of Health and Families
PO Box 2234,
Alice Springs, NT, 0871
Phone: (08) 8951 7777
2. Table of Contents
1 Acknowledgements 2
2 Table of Contents 3
1 Executive Summary 3
1.1 Background 3
1.2 The Project 3
1.3 Lessons from the literature review 3
1.4 Findings 3
1.4.1 Extent of the problem 3
1.4.2 Quality of care in ASH 3
1.4.3 Continuity of care 3
1.5 Conclusion 3
2 Recommendations 3
2.1 Development, implementation and monitoring of Clinical Guidelines for CM/FTT 3
2.2 Multidisciplinary team approach to assessment and planning 3
2.3 Cultural safety for children with CM/FTT and their families 3
2.4 Standardised documentation 3
2.5 A dedicated team response to improved service delivery 3
2.6 Review and resourcing of nutrition management and feeding practices in ASH 3
2.7 Clarification and review of roles in managing CM/FTT inpatients 3
2.8 Staff development 3
2.9 Ongoing Research and Advocacy 3
2.10 Interface between ASH and FACS 3
2.11 Interface between ASH and services continuous with ASH in CM/FTT 3
2.12 Coordinated departmental and regional response 3
Primary and secondary service system development 3
2.13 Primary Prevention 3
2.14 Early intervention and family support infrastructure 3
2.15 Investigation of other treatment contexts 3
3 Introduction 3
3.1 Background 3
3.2 Purpose and scope 3
3.3 Method 3
3.4 Terminology and definitions 3
4 History of CM/FTT initiatives in CA 3
4.1 The Child Health Unit (CHU) (1972-1998) and Mt Gillen 3
4.2 Growth Action and Assessment Program (GAA) 3
5 Results 3
5.1 Summary of quantitative findings 3
5.1.1 Nutritional status of paediatric patients in ASH 3
5.1.2 Assessment of nutritional status 3
5.1.3 File Audit 3
5.2 Quality of Care: Summary of qualitative findings 3
5.2.1 ASH Survey Results 3
5.2.2 Main themes from ASH surveys 3
5.2.3 Mapping of Patient Journey 3
5.2.4 Summary 3
5.3 Continuity of Care: Questionnaire results (see appendix 5.4.5 ) 3
5.3.1 ASH interface with Remote Communities 3
5.3.2 ASH interface with community-based organisations 3
5.3.3 Key service or systems gaps in CM/FTT 3
5.4 Appendices 3
5.4.1 Appendix 1 Steering Committee 3
5.4.2 Appendix 2 Stakeholders consulted 3
5.4.3 Appendix 3 Social Work Procedures 3
Appendix 4 File Audit Questions 3
5.4.4 Appendix 5 File Audit Report 3
5.4.4.1 Location by State 3
5.4.4.2 Location by urban/remote CA 3
5.4.4.3 Primary vs secondary diagnoses of CM/FTT 3
5.4.4.4 Weight deficits in ASH 3
5.4.4.5 Weight Gain in ASH 3
5.4.4.6 Length of stay (LOS) 3
5.4.4.7 Number of addresses 3
5.4.4.8 Months of CM/FTT before admission 3
5.4.4.9 Pre episode service provision 3
5.4.4.10 Discharge planning 3
5.4.4.11 Readmission rates 3
5.4.5 Appendix 6 Service Provider Questionnaire 3
Table of Figures
Figure 1 Episodes from Caresys 3
Figure 2 Episodes from file audit 3
Figure 3 Locality 3
Figure 4 Primary and secondary diagnoses 3
Figure 5 Wasting 3
Figure 6 Stunting 3
Figure 7 Weight for height 3
Figure 8 Weight gain during admission 3
Figure 9 Length of stay 3
Figure 10 Episodes with a discharge plan 3
Figure 11 Readmission rates 3
Acronyms
ADx Additional Diagnosis
AHW Aboriginal Health Worker
AIN Assistant in Nursing
ALO Aboriginal Liaison Officer
ARACY Australian Research Alliance for Children and Youth
ASH Alice Springs Hospital
ASYASS Alice Springs Youth Accommodation and Support Service
CA Central Australia
CFRH Centre for Remote Health
CHU Child Health Unit
CM Child Malnutrition
CM/FTT Child Malnutrition/ Failure to Thrive
CY&MH Child, Youth & Maternal Health
DHF Department of Health and Families
DMO District Medical Officer
DV Domestic Violence
EASA Employee Assistance Services Australia
ED Emergency Department
EM Explanatory Model
FACS Family and Community Services
FAS Foetal Alcohol Syndrome
FASD Foetal Alcohol Spectrum Disorder
FTT Failure to Thrive
GAA Growth Action and Assessment Program
IDA Iron Deficiency Anaemia
LBW Low Birth Weight
LOS Length of Stay
MC&YH Maternal, Child and Youth Health
MPH Medical Placement Home
MSF Medecins Sans Frontieres
NHMRC National Health and Medical Research Council
NOFTT Non Organic Failure to Thrive
NPY Ngaanyatjarra Pitjantjatjara Yankunytjatjara
NT Northern Territory
OT Occupational Therapist
PDx Primary Diagnosis
PHC Primary Health Care
PND Post Natal Depression
PSA Patient Services Assistant
RAN Remote Area Nurse
RDH Royal Darwin Hospital
RTHC Road to Health Chart
RUF Ready to Use Food
SA South Australia
SD Standard Deviation
SNAICC Secretariat of National Aboriginal and Islander Child Care
SHFA Standard Height for Age
SWFA Standard Weight for Age
SWFH Standard Weight for Height
UK United Kingdom
UNICEF United Nations International Children’s Fund
US United States
WA Western Australia
WHO World Health Organisation
Executive Summary
1 Background
• Aboriginal children in the NT have much higher rates of malnutrition and failure to thrive than their non- indigenous counterparts, with associated high burdens of disease and high hospital admission rates. This is reflected in the substantial burden of care of CM/FTT in ASH, with lengthy hospitalisations and readmissions. Even though it is generally agreed that tertiary treatment is not the best form of management in most cases, ASH continues to play a substantial role in the continuum of care for indigenous children with CM/FTT
• Dilemmas around the medicalisation of CM/FTT in the context of developmental adversity for indigenous children were leading to ongoing tensions around management and quality of care issues at ASH. It was therefore decided to conduct a project to identify the extent of the problem, clarify the issues in ASH, look at how ASH interacts with others services in the ‘patient journey’ for CM/FTT and make recommendations for change
2 The Project
• The CM/FTT project is a quality improvement initiative of Alice Springs Hospital (ASH). The overall aim of the CM/FTT project was to improve the quality and continuity of care for children with CM/FTT. The project officer undertook a literature review and consulted with government and non-government service providers in the field of CM/FTT. A retrospective file review of children with a diagnosis of CM/FTT was conducted. The project conducted quality improvement activities in ASH, mapped current services for CM/FTT and made recommendations
• The project looked at both failure to thrive and malnutrition in an attempt to clarify definitional and diagnostic uncertainty in ASH. For the purposes of this report ‘CM/FTT’ is used to describe the conditions of malnutrition and failure to thrive, which both refer to undernutrition in children
• Although not confined to the indigenous population, it is overwhelmingly indigenous children who are hospitalised for CM/FTT in ASH. Therefore the project focused on CM/FTT in indigenous children
3 Lessons from the literature review
• It is only relatively recently that the importance of maternal and child nutrition has been recognised at national and global levels. Methodological and logistical difficulties have limited the development of knowledge in this area and ultimately the quality of care
• The literature on CM/FTT is vast and complex. The literature on malnutrition derives from population-based studies in developing countries, whereas the literature on FTT tends to derive from numerous smaller hospital or community based studies in developed countries. Neither of these contexts is readily applicable to the unique Central Australian context, thus leaving clinicians to draw on philosophical and ethical decision-making frameworks for treatment interventions in the absence of ‘hard’ evidence
• There are inconsistencies in terminology in the literature, with no ‘gold standard’ definitions or diagnostic criteria, especially for FTT. Even though it is often poorly assessed, growth is the main measure of CM/FTT. Other determinants of child wellbeing are more difficult to measure. Malnutrition tends to be measured by static measurements and failure to thrive by longitudinal growth. CM/FTT can be mild, moderate or severe. It is important to address the severity of the nutritional state as this informs management
• The causes of CM/FTT are multiple and complex. Childhood nutritional health outcomes are a function of direct and indirect causes manifested at the child, family, community and socio political levels. In CA, the high level of disadvantage of indigenous families is well documented. The final cause of CM/FTT is lack of nutrition, but poor growth in utero, problems with the transition to complimentary foods, inadequate quality and quantity of food, acute and chronic infections, poor living conditions, overcrowding, poor socioeconomic status, family and community dysfunction, poor access to early intervention and social support services, social exclusion and poverty can all be contributors
• There is increasing recognition that child growth and development in the first few years of life sets the foundation for future learning, behaviour and health over the life cycle. It is now known that undernutrition in utero and early childhood has serious short and long term consequences, including increased morbidity and mortality, chronic disease in adulthood (diabetes, heart disease, kidney disease) and long term cognitive deficits. Internationally, investment in early childhood growth and development is now seen as an investment in society
• The literature highlights an overall lack of good evidence for interventions for CM/FTT. Hospitalisation was historically the treatment for both malnutrition and FTT. However there has been a policy shift internationally from tertiary treatment towards primary and secondary interventions. Hospitalisation is no longer recommended except for cases of severe CM/FTT, complex cases or where there is a failure of community based intervention. In Australia, undernutrition has been shown to be highly correlated with readmission rates and longer LOS. Hospital admission rates and LOS have also been shown to be affected by degree of remoteness and access to local health services
• The importance of individualised multidisciplinary assessment incorporating medical, nutritional and psychosocial factors is highlighted in the literature. Assessment can be used to develop a shared understanding of the problem with the family. The approach should be tailored to the family’s strengths and needs. A thorough assessment itself can be seen as effective in provoking change. The literature highlights that deficiencies in assessment, consistency and interdisciplinarity can lead to a potentially dangerous lack of continuity of care
• There is a dearth of evidence for best practice responses and solutions to CM/FTT in the NT context. There is a diversity of community-based interventions but poor evidence for their effectiveness. A recent NT review found that growth faltering may be prevented by community-based nutrition education/counselling interventions using a range of strategies and involving carers, community health workers and representatives, as well as addressing the underlying causes of growth faltering. It was recommended that other interventions should only be considered in the context of a broad primary health care approach and/or based on identified local needs
• A set of broad principles that underpin good practice can be identified from the literature. These are the importance of primary prevention and secondary interventions, early intervention, thorough individualised assessments, a multidisciplinary team approach, the significance of the introduction of complementary foods period, empowerment of women, the importance of parenting interventions and combined interventions addressing both nutrition and nurture. Principles for engagement with families around CM/FTT include non-judgemental, holistic and strengths based approaches, developing a shared understanding with Aboriginal families about growth and development, and indigenous participation and control in identifying problems and solutions. The importance of the continuum of care is highlighted in the literature
(see full literature review for references)
4 Findings
• The project identified that there are a number of significant issues affecting the management of CM/FTT in ASH. The project also found that current primary and secondary interventions for CM/FTT in the NT are insufficient and appear to be failing to decrease the dependency on hospitalisation for these children
1 Extent of the problem
• It is difficult to get an idea of the real extent of the problem, as overall data is not collected. Although growth rates are slowly improving, GAA data indicates that indigenous children in remote CA communities still experience high levels of underweight, stunting and wasting. Indigenous infants are also still twice as likely to be born with LBW as non-indigenous infants
• The 2 periods of highest vulnerability for growth faltering are in-utero and the introduction of complementary foods period (6 - 24 months of age), with children’s transition to foods that are often inadequate in quality and quantity in a context of structural disadvantage. Although living in a first world country, this pattern is similar to that identified in children in developing countries, with a prevalence of stunting in the NT also similar to that in developing countries. There has been little change in the last 4 years in rates of stunting, wasting and underweight in the Alice Springs remote region
• CM/FTT took up approximately 10% paediatric bed days in ASH in the 2006-7 financial year, compared to 12% in 2001-2
• The project identified that Indigenous children are more likely to be hospitalised for CM/FTT. Only 3 non-indigenous children were admitted to ASH with CM/FTT in 2006-7
2 Quality of care in ASH
• Children with CM/FTT and their families are not receiving an optimal service in ASH. There is a culture of negativity on the paediatric ward around CM/FTT, and issues around respect and cultural safety both for staff, and children and their families. A lack of clinical evidence and the medicalisation of CM/FTT in the CA context have exacerbated philosophical and ethical differences amongst clinicians and caused tensions that can interfere with clinical management
• Due to the pressures of acute nursing, nurses are unable to provide the extra time, consistency, and specialised knowledge and skills required for nursing children with CM/FTT. Ideally there should be primary or team nursing of these children and the opportunity for staff to build up expertise in this area
• Overall there is a need more consistent treatment standards and coordinated management of CM/FTT in ASH. There is room for improvement in the use of definitions and diagnostic criteria, consistency of case planning, coherence of admission and discharge procedures, multidisciplinary assessment, involvement of families and primary care providers, clarification of professional roles in clinical decision making, feeding children in ASH, documentation of interventions and collaboration and communication
• The project identified that there are significant differences in the ‘patient journey’ for children with primary and secondary diagnoses of CM/FTT which impact on quality and continuity of care. A child admitted to ASH with a primary diagnosis of CM/ FTT is more likely to have severe CM/FTT and to have a planned admission in consultation with primary care providers and family. However, two thirds of children have a primary diagnosis of eg respiratory or diarrhoeal infection etc with a secondary diagnosis of CM/FTT. This is problematic as these children tend to be kept in ASH for management of CM/FTT once the primary condition is treated. This can lead to unplanned and lengthy hospitalisations, causing tensions about management amongst staff and stress and inconvenience for families
• The paediatric liaison service plays a critical role in CM/FTT in ASH and the community. The role is highly valued by the community but there are tensions at ASH around ward-based management of CM/FTT. It appears that the role is currently over-stretched and there is a need for a more sustainable model of service delivery
• There is an urgent need for ASH to clarify its role in the continuum of care for children with CM/FTT. There is uncertainty about whether hospitalisation is useful or what it can achieve, but it appears to be used as a fallback strategy when there is nowhere else for children to go
• There is an opportunity for ASH to form better partnerships with the primary and secondary sector to improve practice in relation to CM/FTT and advocate for needed service system development
3 Continuity of care
• The child’s journey with CM/FTT through the health system is affected by poor coordination and collaboration and a lack of services. There is a need for improved linkages across the continuum of health care providers
• There are concerns that child health is not as prioritised as it used to be in remote CA communities as a result of increasing demands on remote health clinics. GAA is perceived as not functioning optimally, with a focus on measuring children and limited capacity for action planning and follow up
• There are serious gaps in individualised assessment and intervention planning for children ‘at risk’ in remote communities, and a lack of appropriate secondary service system development for referral. Community expectations of ASH may be based on the lack of alternative referral options
• Stakeholders uniformly highlighted the complexity of the issues involved in working with children with CM/FTT and their families and the need for one on one in-depth work with children ‘at risk’
• There is confusion about thresholds for referral to FACS in a context of structural disadvantage, and concerns that children are being referred to FACS and placed in foster care due to a lack of other referral options
5 Conclusion
• Internationally, the need to address CM/FTT is now recognised as overwhelming and urgent. In Australia, the literature continues to attest to the poor growth patterns of indigenous children and the ongoing barriers to their optimal development
• The challenge remains to improve quality of care at the primary, secondary and tertiary levels, notwithstanding the complex mix of individual, social, cultural, economic and environmental contributing factors. It is recognised that these factors extend well beyond the control of the health sector. There is, nevertheless, room at the local level for improvements in the delivery and coordination of health services for children with CM/FTT in CA
• The history of attempts to improve practice on the paediatric ward attests to the difficulties of effecting change in this ambiguous and complex area. However, by clarifying its role and committing to improvements in hospital practices, ASH now has an opportunity to play a leadership role in the better identification and treatment of CM/FTT, which will contribute to improved outcomes for this and future generations
Recommendations
The following recommendations address the common themes that emerged from the literature and interviews
Quality Improvement in ASH
1 Development, implementation and monitoring of Clinical Guidelines for CM/FTT
• That Clinical Guidelines be developed by the paediatric team to represent the ASH consensus on practice guidelines for CM/FTT in the CA context
• That the Clinical Guidelines include the following areas;
o Causes of CM/FTT, the role of the ASH paediatric department in treating CM/FTT, terminology and definitions, admission and discharge criteria, gaols of admission, and use of micronutrients
o Anthropometric measurements to be used in assessing nutritional status, and guidelines for the presentation of nutritional status at ward rounds and in discharge summaries
o Clinical pathways for children with a primary and secondary diagnosis of CM/FTT
o A framework for assessment of risk for children with CM/FTT that incorporates the parameters of age, duration and severity of CM/FTT and psychosocial risks
• That the guidelines are implemented and monitored by a dedicated multidisciplinary CM/FTT team (see below)
• That all existing and new staff be oriented to the clinical guidelines
2 Multidisciplinary team approach to assessment and planning
• That a multidisciplinary case planning meeting is held for every child on admission and discharge. Disciplines to include a combination of medical, nursing and allied health
• That the child’s family and community care providers are included in case meetings as part of the assessment and planning team
• That Aboriginal Liaison Officers, Aboriginal Health Workers, and interpreters are routinely involved in the assessment and planning team
• That children with CM/FTT and their families receive comprehensive, multidisciplinary assessments in ASH (eg medical, nutritional, psychosocial, developmental, speech). Assessment tools may need to be modified for the local context
3 Cultural safety for children with CM/FTT and their families
• That parents and carers are included in the care team and treated with a respectful and non-judgemental approach
• That where appropriate parents of children with a secondary diagnosis of CM/FTT are given choices about the timing of treatment for CM/FTT
• That Aboriginal Liaison Officers, Aboriginal Health Workers, and interpreters are routinely involved in working with parents and carers
• That parents and carers receive education, assistance and support in ASH about child development, nutrition, weaning, the importance of play and stimulation, and the consequences of CM/FTT
• That education in ASH is planned, delivered and documented in a consistent fashion to avoid gaps and duplication. This will require a clarification of staff roles in educating parents and carers
• That educational resources used in ASH are consistent with community-based resources where possible eg Infant Feeding Guidelines
• That an ALO be allocated to the paediatric ward to enhance communication between the paediatric and ALO teams
• That all staff receive mandatory cultural safety training and that there is a commitment to ongoing monitoring of cultural safety on the paediatric ward
4 Standardised documentation
• That standardised documentation is developed to facilitate communication and commitment to case planning in ASH eg
o Admission and discharge proformas
o Case planning proformas (including goals for admission etc)
o Standardised referral forms and procedures
o ‘Checklist’ for communities sending in a child to ASH for CM/FTT
5 A dedicated team response to improved service delivery
• That there is a dedicated team response to improved service delivery for CM/FTT in ASH. Preferred models are;
o Management
• A multidisciplinary team to provide consistency of management and develop specialised knowledge of the area. The team would include a ‘lead’ consultant and nursing and allied health representation. The team would be responsible for implementing and evaluating the Clinical Guidelines for a trial period
o Quality Improvement
• A Lean Health Team to undertake quality improvement processes in the area of CM/FTT eg mapping patient journey, qualitative mapping with parents/carers, the development and implementation of CM/FTT proformas and procedures
o Nursing
• Dedicated or primary nursing staff to work with children with CM/FTT and their families. Given the demands of acute care, staffing levels and skill mix would need to be reviewed to enable this response
o AHW
• That the role of the AHW in relation to CM/FTT is further explored. As with medical and nursing staff, the AHW could be supported to develop specialised expertise in this area
• That a dedicated area of the ward be identified for children with CM/FTT
6 Review and resourcing of nutrition management and feeding practices in ASH
• That a paediatric dietician be employed to provide a service on the paediatric ward and to conduct a review of the feeding practices for children with CM/FTT in ASH. This review to include;
o The development of nutrition management protocols for children with CM/FTT, including assessment of nutritional status and communication of nutrition information
o A clarification of roles in relation to feeding including
▪ A review of the role of paediatric liaison in relation to feeding
▪ Strategies for upskilling nursing staff in relation to feeding assessments and nutritional interventions
▪ A recognition of the pressures on nurse staffing and an investigation of alternative models of feeding eg feeding assistants, meal monitors, assistants in nursing
o A review of the use of paediatric supplements in ASH
o A review of the ASH food service
7 Clarification and review of roles in managing CM/FTT inpatients
• That the roles of consultants, paediatric liaison, bed manager and ward nurses in decision-making about children with CM/FTT on the paediatric ward be clarified
• That the role of paediatric liaison in relation to children with CM/FTT be reviewed with a view to;
o The most appropriate role for paediatric liaison on the ward
o The respective roles of consultants and paediatric liaison
o How to develop a more sustainable method of service delivery
o The need for increased staffing in paediatric liaison
• That the respective roles of bed manager and paediatric liaison and how they interact in relation to CM/FTT be reviewed
• That nursing staff be resourced in terms of skills and ratios to provide an appropriate service, if CM/ FTT inpatients are to be managed at a ward level
8 Staff development
• That ASH provides professional development and support opportunities for staff working with children with CM/FTT and their families by;
o Mandatory inservices for paediatric staff - to include orientation to CM/FTT, feeding assessment, measuring nutritional status, communication and engaging with families, working with parents as partners, strengths based interventions, allied health roles and town based and remote services for CM/FTT
o The paediatric social worker to collaborate with FACS in providing ASH inservices on FACS interventions for CM/FTT
o Providing opportunities for clinical supervision and debriefing, given the high burden of care and cultural and ethical complexities of the field. This could happen internally or be outsourced eg EASA
o Targeting ASH education to senior nurses, primary nurses and registrars, given their hands on role on the ward
o Taking a key role in community education about CM/FTT by;
▪ Developing partnerships with other agencies eg CM/FTT forum, ethical decision making workshop
▪ Developing a CM/FTT training package for delivery to DHF and community based staff
9 Ongoing Research and Advocacy
• That ASH plays a role in identifying and addressing current gaps in knowledge and/or clinical service provision in the area of CM/FTT in CA. In particular;
o The role of micronutrients in CM/FTT
o Diagnosis and treatment of Foetal Alcohol Syndrome/ Foetal Alcohol Spectrum Disorder
o Diagnosis and treatment of Post Natal Depression in mothers
o Culturally appropriate developmental assessments and interventions for children with CM/FTT
o Accurate assessment of nutritional status
• That ASH advocate for children with CM/FTT and their families at a clinical and structural level. In particular;
o Equity of access and care for indigenous and non-indigenous children
o Identification of needed service system development
o Promotion of community based programs and interventions
o Support for primary health care staff on assessment, clinical management and nutrition issues
o Improved data collection and sharing
Continuity of Care
10 Interface between ASH and FACS
• That notifications of children with CM/FTT on the paediatric ward be documented in writing and be accompanied by a supporting medical letter and growth chart. All staff to receive regular inservicing about the role of FACS and notification processes
• That ASH procedures be written identifying the role of the paediatric social worker in relation to CM/FTT and processes for reporting to FACS (see appendix 5.4.3)
• Where possible, that the paediatric social worker be involved in notifications to FACS
• That children in foster care for CM/FTT be regularly reviewed by a paediatrician and dietician, and receive regular multidisciplinary case planning meetings and planning for return to home where appropriate
• That there be increased education and support for foster carers about therapeutic interventions for CM/FTT eg nutrition, feeding, stimulation, play
• That opportunities for discussion are set up at an executive level between ASH and FACS to address quality and continuity of care for children with CM/FTT
11 Interface between ASH and services continuous with ASH in CM/FTT
• That communication and collaboration between ASH and services continuous with ASH in CM/FTT be enhanced by;
o ASH defining and communicating its role in relation to CM/FTT to the community
o Promoting and participating in Under 10’s meetings
o The development of standards for communication between ASH staff and other services eg
• Improved discharge summaries/ sent out promptly to the appropriate positions and services
• Standardised communication about nutrition and psychosocial interventions in ASH
• Standardised referral processes in and out of ASH
o The development of uniform messages between ASH and the community about growth, nutrition, child development and wellbeing, including;
• Consistency of anthropometric data and growth charting across the community, ASH and FACS
• Improved integration of hospital and community based treatment recommendations for CM/FTT eg the role of micronutrients, assessment of FAS/FASD
• That linkages between ASH and mental health services and domestic violence services be enhanced for improved interventions for parents/carers
12 Coordinated departmental and regional response
• That child and maternal health is prioritised in DHF
o That there is an overall departmental response to CM/FTT to improve coordination, communication and information sharing within and across sectors
o That there is a renewed focus on GAA action planning, education and training
• That a regional response to CM/FTT in CA be promoted by the establishment of a CM/FTT / maternal and child health working group to;
o Assess the extent of the problem
o Increase collaboration and coordination of child health interventions between primary care and secondary services, ASH and FACS
o Map the journey of CM/FTT across the continuum of services
o Develop and regularly update a map of services and a directory of training resources for working with children with CM/FTT
o Establish a centralised or collaborative data collection system in order to build a research base and advocate for needed service system development
▪ To have representatives from DHF and community based services
Primary and secondary service system development
Although this section is beyond the scope of ASH to implement, the project has identified consistent themes from the literature and qualitative research.
15 Primary Prevention
• That CM/FTT be prevented by;
o The proper support and protection of community based, universal, locally run initiatives
o Increasing the focus on the provision of ante natal, maternal and early child health services
o Promoting access and equity of care for indigenous and non-indigenous children
16 Early intervention and family support infrastructure
• That an improved early intervention and family support infrastructure be developed and resourced by;
o The provision of home based services and building the capacity of community based agencies to work with at risk families
o A renewed commitment to the GAA program, with an emphasis on enhanced action planning and training and support for RANs and AHWs
o A review of the use of growth charts as the primary education tool for CM/FTT. This would require extending understandings of child health and wellbeing beyond physical growth to include culturally appropriate education tools for nutrition interventions, early child development, stimulation, relationships, and parenting strategies
o Increased recognition of the importance of Aboriginal people in taking a lead role in explanations of and strategies for improving child growth and development
o Individually targeted programs and services for children ‘at risk’
• The provision of multidisciplinary case management/case work services in remote CA communities for more in-depth work with families eg
• A child nutrition service similar to NPY and Nganampa
• Remote/outreach social work/dietetic services to ameliorate the gap in case management in remote CA communities
• Increased number of outreach paediatric nurses
17 Investigation of other treatment contexts
• That the feasibility, sustainability and cost-effectiveness of alternative models for the prevention and management of children with CM/FTT are investigated. Possible models might include;
o A multidisciplinary CM/FTT Outpatient Clinic delivered at ASH
o Multidisciplinary Outreach Clinics delivered at Stuart Lodge, Mt Gillen or another location
o The provision of nutrition support positions at Mt Gillen to work with children from remote CA communities
o A centre based child health education and support service for intensive assessment and therapeutic interventions with children at risk
• This could be a town based residential unit or day facility eg Family Care Cottage or Karitane models
• This would need to be thoroughly researched to ensure applicability to local needs
o Community based nutritional rehabilitation models eg SA Family Centres
Introduction
1 Background
• CM/FTT poses significant challenges for children, their families and the community in CA. Even though it is generally agreed that hospitalisation for children with CM/FTT may not always be the most appropriate form of health service delivery, current primary and secondary interventions appeared to be failing to decrease the dependency on hospitalisation for these children
• The CM/FTT project is a quality improvement initiative of Alice Springs Hospital. The project arose out of a perception that CM/FTT contributed significantly to the burden of care on the paediatric ward, often leading to lengthy hospitalisations and readmissions
• There is a long history of attempts to improve the management of children with CM/FTT on the paediatric ward. Most recently, in 2005 a series of meetings were held by the paediatric department to develop clinical guidelines for CM/FTT. These meetings stalled around busy workloads, the difficulties of definitions and differing clinical practice approaches to CM/FTT. It was therefore decided that it was time to review the knowledge base in ASH and the community around CM/FTT to inform continuing practice and to enhance care across the range of services
2 Purpose and scope
• The overall aim of the project was to improve the quality and continuity of care for children with CM/FTT
• In particular the project intended to identify the burden of CM/FTT for ASH, improve the management of children with CM/FTT in ASH, improve the understanding in ASH of the roles of other services for children with CM/FTT, and improve the links between services that are continuous with ASH in the patient's journey
• The project was based within ASH and focused on quality improvement processes and how ASH interfaces with other agencies in working with children with CM/FTT and their families
• Limitations of the project included the temporary relocation of the Paediatric Ward to the first floor for maintenance purposes. This interrupted ‘usual’ patient flows and practices and limited the efficacy of any mapping process within ASH. Two reviews of Paediatric services were conducted during the course of the project. This had an initial destabilising effect and contributed to tensions in the department. A number of CM/FTT committee members also moved from Alice Springs during the course of the project
3 Method
• The Project Officer developed a project plan and established a steering committee. A literature review was conducted to inform the project. Qualitative and quantitative tools were employed to map the current situation. A questionnaire was developed for consultation with ‘external’ stakeholders and a survey tool was used for ASH based stakeholders. Elements of Lean Thinking methodology were used to conduct process mapping with the Paediatric Unit. Data about the profile and presentation patterns of children with CM/FTT was collected and analysed from ASH patient database (Caresys), and an audit of a sample of files of children with a primary or additional diagnosis of CM/FTT was conducted to provide baseline quantitative data
• The project officer facilitated the development of clinical guidelines for CM/FTT by the paediatric team and developed social work procedures for CM/FTT for the paediatric and social work departments
4 Terminology and definitions
• The project looked at both failure to thrive and malnutrition in an attempt to clarify definitional and diagnostic uncertainty in ASH. There are no gold standard definitions for failure to thrive and malnutrition. The terms are used both interchangeably and to describe separate conditions based on causation and severity. The same anthropometric criteria can be used to measure CM and FTT
• For the purposes of this report CM/FTT will be used to describe both malnutrition and failure to thrive. Definitions from the literature are as follows;
o Growth faltering- a reduction in the expected rate of growth along an infant’s previously defined growth curve
o Failure to Thrive- growth deceleration or crossing growth centiles, particularly falling through 2 centile spaces on the standard child growth chart
o Malnutrition- inadequate intake of protein, energy, and micronutrients, with resulting frequent infections. Malnutrition can be mild, moderate, or severe
(see literature review for further discussion on definitions and terminology)
History of CM/FTT initiatives in CA
Previously in CA a town based residential service played a key role in interventions for CM/FTT in indigenous children. The current response is based on an NT wide primary health care approach.
1 The Child Health Unit (CHU) (1972-1998) and Mt Gillen
• Remote Health funded the CHU in 1972 in CA to address the high infant mortality rate of Aboriginal children. The aims of CHU were to provide a town based, culturally appropriate, nutritional rehabilitation service providing education and support to families. It had good results initially in terms of reducing mortality
• In the 1980’s the CHU was scaled down to a step-down unit located at ASH and served as a facility for early discharge from hospital for Aboriginal children with poor growth and their carers
• A number of reviews of the CHU found that it achieved short-term results in terms of weight gain, providing a spectrum of bandaid services to women and children from remote communities (food, shelter, safety, education, respite). However, the goal of sustainable long-term rehabilitation (children maintaining weight gain and preventing readmission) was not achieved
• Funding for CHU services was transferred to a more comprehensive service model for remote communities including health promotion (Strong Women, Strong Babies, Strong Culture program and nutrition workers and remote nutritionists), prevention (GAA), early intervention (data base and action planing), and to the establishment of Mt Gillen, an ante natal facility/ accommodation service in Alice Springs
• Whilst it was acknowledged that some children would still require ‘nutritional rescue’, it was seen as more appropriate and less medicalised to use and support local community based resources and programs to work with the families of children that were not growing well
• There was some ‘slippage’ of CHU functions to Mt Gillen with NPY and Nganampa buying beds at Mt Gillen for nutritional rehabilitation, as there were no GAA programs in SA or WA. GAA also bought some beds from Mt Gillen for respite care for individual cases
• The project found that there appears to still be an attachment to the ‘CHU model’ among some CA service providers as an intervention for CM/FTT
2 Growth Action and Assessment Program (GAA)
• GAA was developed and implemented in CA in 1998 as a way of providing a more appropriate intervention for poor growth than CHU. Its aims included growth monitoring, the development of family centred growth action plans to assist infants and children with growth faltering, training of all remote health staff, promotion of appropriate weaning diets to communities, funding and support for community nutrition initiatives, and data collection and feedback to local communities with the aim of initiating local responses. In recent years with several restructures and the centralisation of program management in the NT, GAA has become more focused on its monitoring functions, although some of the other elements remain
Results
1 Summary of quantitative findings
1 Nutritional status of paediatric patients in ASH
• Based on ASH Caresys data for the 2006-7 financial year there was a total of 1625 separations on the paediatric unit. The number of separations from the paediatric unit for children aged 0-3 (excluding neonates) with a primary diagnosis or secondary diagnosis of FTT or malnutrition= 309 episodes, and 153 children
• About one third of these episodes had a primary diagnosis of CM or FTT (31 episodes with a primary diagnosis of malnutrition and 20 episodes with a primary diagnosis of FTT)
• The average LOS for children with a primary or secondary diagnosis of FTT was 9.4days. The average LOS for children with a primary or secondary diagnosis of malnutrition was 12.0 days
• There is a relatively small group of children is taking up approximately 10% of bed days on the paediatric ward. This situation has changed little from the 2001-2 financial year when CM/FTT took up 12% bed days
2 Assessment of nutritional status
• ASH coders stress that the data available to monitor trends is only as good as the documentation in the medical records. There is currently poor assessment and documentation of nutritional status of paediatric patients in ASH, which may be resulting in a poor measure of the hospital’s activity in relation to growth. There is a need for ASH to develop agreed protocols for assessment of nutritional status and communication of nutrition information on the paediatric ward. It is recommended that the child’s current measurements be presented along with their longitudinal growth and a growth chart. All staff should be oriented to the protocols
• This would enable more accurate data collection about nutritional status of children presenting to ASH, and improved reporting of nutritional status at ward rounds and in discharge summaries. ASH could take leadership role by conducting more accurate assessments of nutritional status and developing standards for communication with the community
• There is a need to decide which anthropometric measures to use. Z scores provide a good measure of population nutritional status and are useful in research, but they can be difficult to understand at the hospital and community level. Percentiles are better understood and more commonly used (Recommendation 2.1)
3 File Audit
• A retrospective file review was conducted for the financial year of 2006-7 of all episodes of children aged 3 months to 3 years with a primary or secondary diagnosis of malnutrition or FTT. Using an unbiased selection method a subset of 54 patients, or approximately one third of total cases, was selected. The file audit has generated a substantial amount of data, which will continue to be analysed for future planning and publication (see appendices 5.4.4 and 5.4.5)
2 Quality of Care: Summary of qualitative findings
1 ASH Survey Results
Interviews with paediatric staff were conducted to identify issues in the management of CM/FTT in ASH. The interview revolved around 3 open ended questions – what is happening, why is it happening, how could it be improved? The interviews were summarised and categorised into major themes. The results of the survey were fed back to the paediatric team as part of the initial process of developing clinical guidelines. The interviews identified that there is an overall negativity on the paediatric ward around issues to do with CM/FTT. This negativity occurs across different disciplines and levels and impacts on morale and working relationships on the ward and on the quality and continuity of care for children with CM/FTT
What is happening?
‘The whole model is wrong- it’s got to work better’
• Poor planning at admission and discharge
• Inconsistency of management/ lack of commitment to management plans
• Poor documentation of interventions
• Confusion about roles and responsibilities within and across disciplines
• Confusion and concern about current feeding practices on ward
• Lack of continuity of practice between ASH and the community
• Lack of clarity about the role of FACS
• Poor communication between services
• Judgemental approach to families
Why is it happening?
• Lack of a team approach
• Lack of clarity about goals of admission and targets for discharge
• Lack of clarity or agreement about the role of ASH in CM/FTT
• Lack of involvement and empowerment of families
• High turnover of staff.
• Lack of paediatric nursing skills
• Lack of agreement about roles and responsibilities in relation to feeding children
• Feeding not valued or prioritised on the ward
• Lack of leadership
• Lack of valuing and sharing of knowledge of different disciplines
• Lack of referral options
• Lack of evidence to inform practice
2 Main themes from ASH surveys
An area of clinical uncertainty ‘It’s a grey area – as clear as mud’
• The paediatric consultants highlighted concerns about the lack of an evidence base to inform their practice in relation to CM/FTT. The vast literature on the subject doesn’t translate into easy applicability to the CA context, which is seen as falling between developed and developing countries in terms of presentations of CM/FTT
• In the absence of scientific evidence, clinicians draw on ethical and philosophical frameworks to assist in decision-making. There are philosophical conflicts around ASH’s moral responsibilities regarding the rights of a child to food, shelter, growth and safety versus weighing up the harms and benefits of hospitalisation. Clinicians can’t be sure they are doing good for these children and there are concerns about the harms of hospitalisation (nosocomial infections, family disruption, impacts of rapid weight gain and feeding practices, concerns about informed consent)
• However clinical decisions still have to be made in the absence of research evidence. There is a need for productive engagement amongst the paediatric team to develop practice guidelines for CM/FTT in the CA context (Recommendations 2.1 and 2.4)
Management of CM/FTT
• The lack of a clear evidence base contributes to difficulties around the clinical management of CM/FTT in ASH. There is little consensus about goals and targets of admission. This can lead to inconsistent or delayed management, and plans can change when consultants change. This is frustrating for staff and family. Currently there is confusion about the respective roles of consultants and paediatric liaison in making decisions about the management of CM/FTT. The overall perception is that paediatric liaison drives the management of CM/FTT in ASH. There is a need for a clarification of the clinical management of CM/FTT in ASH, with an emphasis on multidisciplinary management as recommended in the literature (Recommendations 2.1, 2.5 and 2.7)
Role of paediatric liaison and bed manager
• Paediatric liaison plays a key role in relation to CM/FTT in ASH and in the community. The workload of paediatric liaison appears to be unsustainable with current staffing levels. Paediatric liaison currently manages CM/FTT outpatients (outreach, follow up, remote visits, community liaison, referrals, management of children with CM/FTT in foster care and at Mt Gillen), as well as providing ward based CM/FTT education and consultation and managing complex cases on the ward
• There are tensions between ward nursing staff and paediatric liaison around ‘ownership’ of CM/FTT. Nurses want to be treated as respected team members in decision making about CM/FTT, but paediatric liaison lack confidence in the current commitment and expertise of nursing staff to provide an appropriate service
• The bed manager also has a key role in the patient journey through ASH for children with CM/FTT, although quality of care issues for patients can be in conflict with pressures for discharge. There is a need to clarify the balance in this role between bed management and proper discharge planning for complex cases of CM/FTT
• There is an overall lack of clarity of the respective roles of paediatric liaison, bed manager and ward nursing staff in relation to CM/FTT. This leads to tensions between staff, and impacts on the consistency and quality of management of children on the ward. There is a need to review staffing levels and roles of paediatric liaison and bed manager in relation to CM/FTT and how they interact with each other and with ward based nursing staff (Recommendation 2.7)
Mild to moderate CM/FTT ‘The problem is mild to moderate CM/FTT’
• ASH is seeing fewer cases of severe malnutrition than it used to. Hospitalisation for severe malnutrition is generally not contested. Most children being treated in ASH are considered to have mild to moderate malnutrition for which the evidence is less clear. There are different and conflicting opinions about the benefits and aims of admission for these children. There is a need for a review of the clinical pathways for children with mild to moderate CM/FTT (Recommendation 2.1)
Nursing pressures ‘Nursing core business puts clinical needs first’
• Nursing children with CM/FTT requires extra time, specialised knowledge and skills. Ideally there should be primary nursing or team nursing of children with CM/FTT. This offers an opportunity for staff to build up expertise and provides consistency to the child and parent/carer. However current ratios, shift work and differences in skill mix make it difficult to sustain this approach. The current ratio of 1-5 is seen as inappropriate for the high level of nursing care required for the vulnerable population of paediatric patients in ASH. Nurses are frustrated that they are unable to provide appropriate paediatric care for the child and family, but acknowledge that CM/FTT is not seen as a priority on an acute ward (Recommendations 2.5 and 2.7)
Feeding issues
• Feeding issues are pivotal to the management of CM/FTT and a cause for concern in ASH. At present feeding practices for children with CM/FTT in ASH are unclear and inconsistent. Nutritional decision-making tends to fall into the hands of paediatric liaison but the actual feeding of the child is disorganised and inconsistent. Children may be fed by mothers/carers, nurses, AHW, PSA’s, students etc. Whilst feeding is theoretically acknowledged as a role of the paediatric nurse, ASH nursing staff are stretched in their capacity to provide this service to patients. Nurses see it as unrealistic to expect them to feed children at the expense of other more acute priorities
• There is a need for recognition from management and the ward of the importance of an established feeding program for the unique paediatric population of ASH. Nutritional interventions and feeding assessments need to be seen and resourced as a valued component of clinical interventions (Recommendation 2.6)
Disempowerment of Families
• The hospital environment is seen as disempowering and boring for the mother/carer. There are also concerns about the impact of judgmental attitudes on mothers and carers.
• At present there are gaps and overlaps in history taking and education. It is important to give a unified message about the hospital stay to the parent/carer and to give consistent education about feeding, stimulation, child development, nutrition/ weaning /stimulation etc
• ASH has a duty of care to provide culturally appropriate education and support to mothers. There is a need for more continuity of care both in terms of staffing and environment for children with CM/FTT and their parents/carers (Recommendations 2.2 and 2.3)
Underutilisation of ALOs and interpreters
• The paediatric ward currently seriously underutilises ALOs and interpreters in working with these families. It may be useful to trial allocating an ALO to the ward to rebuild the relationship with the ALO team. All staff on the paediatric ward should have regular training on cultural safety and working with ALOs and interpreters
• The AHW is seen as having an important role in working with children with CM/FTT. However this role would need to be developed and supported if carrying special responsibility for children with CM/FTT (Recommendations 2.2, 2.3 and 2.5)
Medicalisation of CM/FTT ‘There is no magic bullet here – the acute issue is the end product of everything else that has fallen down along the way’
• CM/FTT is seen as a medical issue but most of the underlying issues tend not to be medical. There are concerns about the unintended consequences of sending children to hospital for CM/FTT. Ideological differences exist around to what extent intervention to solve the immediate problem (ie lack of food) is warranted or helpful, and whether this detracts from long term promotion/prevention activity by locating the problem in the child. The paediatricians agree that CM/FTT is primarily a problem of the community and social determinants of health and that solutions to CM/FTT should be community and population based
• Paediatricians feel the pressure from the community to continue to admit children with CM/FTT. Decisions about hospitalisation are influenced by the knowledge that children do not have adequate resources on community and there is nowhere else for them to go. However hospital is not seen as the best place to feed children. Lack of access to food may be symptomatic of a host of psychosocial problems such as DV, substance use, overcrowding, homelessness that are difficult to assess and resolve in hospital. There is a need for coordinated multidisciplinary assessment and planning processes to identify the range of contributing factors (Recommendation 2.2), and for ASH to advocate for and support community based management of CM/FTT (Recommendation 2.9)
Relationship with FACS
Notifications
• There is a need for improved consistency and quality of reporting from ASH to FACS. There continues to be uncertainty in ASH about thresholds for notifying children with CM/FTT to FACS, and the response that can be expected by FACS. Given the complex causal factors involved in CM/FTT, it is important that notifications to FACS are based on thorough assessments and backed up by clear documentation. Where possible, FACS notifications for CM/FTT should go through the paediatric social worker. There is a need to develop paediatric social work procedures covering the social work role and process for notifying FACS (see appendix 5.4.3)
• There is an overall poor communication between ASH, FACS and primary care services about new notifications, or case plans for children already notified to FACS. Discussions need to be held at the executive level between ASH and FACS about quality and continuity of care issues in DHF for these children (Recommendation 2.10)
Children in foster care for CM/FTT
• There are some concerns in ASH about a perceived pathway into foster care for children with CM/FTT as a response to notifications to FACS. At present paediatric liaison carries the load of providing training, support and consultation to foster carers and monitoring the growth of children in foster care via paediatric outpatients
• The literature stresses that foster care should be therapeutic for children, with education and support for foster carers and regular monitoring by paediatricians. There is a need for improved systems between ASH and FACS for monitoring growth and development of children with CM/FTT in foster care, supporting and educating foster carers, and planning for return to family. Children should receive individualised and regularly updated care plans with nutritional and weight goals when they go into foster care, as well as regular monitoring by a paediatrician (Recommendation 2.10)
3 Mapping of Patient Journey
Differences in ‘patient journey’ for primary and secondary diagnoses of CM/FTT
• Lean Health methodology was used to conduct current state mapping with the paediatric team. An important outcome of this process was the identification of the different ‘patient journeys’ for children with a primary versus secondary diagnosis of CM/FTT. Staff identified that children who were admitted with a primary diagnosis of CM or FTT are more likely to have moderate to severe CM/FTT and be admitted through paediatric outpatients after consultation with primary care providers and discussions with family about the aims of hospitalisation
• Children with a secondary diagnosis of CM or FTT are more likely to be admitted through ED with another primary diagnosis (eg respiratory or diarrhoeal infection etc). Once treated for the primary diagnosis children are kept in ASH for management of CM/FTT. This can lead to lengthy hospitalisations that parents/carers are unprepared for and sometimes unwilling to participate in. There can be pressure put on indigenous parents/carers to agree to continued hospitalisation as there may be concerns that they would not return for a pre-arranged admission for CM/FTT at a later date. Notifications to FACS can arise from these circumstances. There is a need for improved negotiations with non-indigenous families around the timing of treatment for mild to moderate CM/FTT as it is highly unlikely that similar pressures would be placed on a non-indigenous parent/carer (Recommendations 2.1 and 2.3)
4 Summary
• Overall there is room for improvement in the management of CM/FTT in ASH in the following areas;
o Consistency of practice
o Coherence of admission and discharge procedures and management plans
o Clarification of roles and definitions/diagnostic criteria
o Commitment to plans
o Collaboration and communication internally and externally
These problems are well known in ASH but attempts to improve practice to date have not been successful. Although the complexity of effecting change to improve patient care in acute health care is not to be underestimated, neither should the urgency to make some headway with issues with CM/FTT be underestimated. These issues contribute significantly to frustration on the paediatric ward.
The literature identifies the importance of “building bridges” for complex change in the health sector. This requires working in a number of directions at once – including developing clinical guidelines, performance indicators and feedback, and strategies for improved patient empowerment and quality management tools. It also requires commitment to a culture of teamwork and leadership on the paediatric ward and improved interaction with colleagues. It is important that attempts at change are adequately resourced and supported at an ASH executive level
3 Continuity of Care: Questionnaire results (see appendix 5.4.5 )
• There are problems with linkages across all sectors and at every point a child can fall through gaps in the system. There is a need for strong coordination, improved communication and information sharing across program lines within DHF and across sectors
1 ASH interface with Remote Communities
Poor coordination and collaboration mechanisms
• Communication and coordination of child health interventions in CA is seen as being negatively impacted by restructures and the current departmental silo structure
• Respondents identified issues with poor communication and coordination between ASH, FACS and remote communities including discharge summaries going to people rather than positions, poor case planning and poor referrals
• The importance and value of the roles of the community paediatric nurse and paediatric liaison in communication and coordination was highlighted (Recommendation 2.11)
Remote workforce issues
• Overall respondents felt that the remote workforce was underskilled and underesourced to appropriately manage children’s growth. There is a perception that child health is not as prioritised as it used to be in remote clinics. RANs are now seen as often being too busy with acute care and chronic diseases to effectively deal with the complexity of growth on remote communities
• The impact, either positive or negative, of individual practitioners on children’s growth was noted, as was the impact of lack of continuity as a result of ‘fly in/fly out’ visits and the huge turnover of staff
• Remote staff are seen as having to manage extreme social determinants of health and complex issues with a lack of referral options for psychosocial services
• The negative attitudes of some staff towards mothers is seen as not being helpful, and there are concerns that clinics are not routinely using AHWs to work with growth (Recommendations 2.11, 2.12 and 2.13)
Implementation of GAA
• Respondents identified serious concerns about the implementation of GAA in remote CA communities. Remote clinics are seen as charting growth but neglecting the action planning component of GAA
• The limitations of growth charts as a cross cultural tool for explaining growth and development was noted
• Respondents identified a need for improved nurse training and orientation to GAA and CM/FTT
• The difficulty of following up transient children was highlighted
• The lack of interventions for individual children and families on remote communities after initial brief interventions and prior to hospital and/or FACS referral was highlighted (Recommendations 2.11, 2.12 and 2.14)
Lack of community based case management/case work services
• Respondents highlighted a serious lack of support services and referral options for psychosocial services in remote communities. There is a lack of multidisciplinary case management/ case work services to provide individualised assessment and case planning for at risk children and families in remote CA communities. There is a need for a workforce on the ground comprised of allied health, AHW’s and FACS to support RANs, and a policy of engagement with other key players
• The MC&YH and remote nutritionist programs appear to be poorly understood, and there are expectations that these programs should be providing case work services as well as primary health services on remote communities (Recommendations 2.14)
Complexity of social environment in remote communities
• Respondents highlighted a range of social issues impacting on children’s growth, including unresolved and multiple grief in families, competing pressures on mothers of different responsibilities (husband, older sick relatives), food security and storage, language barriers, lack of control, DV, substance use and money problems
• Maternal risk factors identified included mother’s who spend a lot of time in town, poor ante natal care, young mothers isolated from social supports, lack of follow up for mothers post natally and poor identification of FAS/FASD
• Respondents felt that many issues were beyond the control of health services
2 ASH interface with community-based organisations
Services’ interface with ASH
• Respondents highlighted a need for improved communication and liaison between community based agencies and ASH in the management of CM/FTT
• The importance of good documentation on referrals and discharge summaries was emphasised for continuity of care of patient and also for patient and staff safety
• The need for ASH to work in partnership with the community in working with children with CM/FTT and families was identified, eg multidisciplinary case conferences for children admitted to ASH to include primary care providers and relevant family
• There is a need for uniform and consistent messages between ASH, FACS and the community about CM/FTT
• Paediatric Liaison is seen as playing a key role in CM/FTT in ASH and in the community. Respondents value the service for its familiarity with both remote and town based issues and its knowledge of families
• Judgmental staff attitudes from some ASH staff are seen as negatively impacting on children and families
• The hospital’s practice in relation to CM/FTT is seen as being inconsistent by community based service providers (Recommendations 2.2, 2.4, 2.11 and 2.12)
Services’ expectations of ASH
• Overwhelmingly service providers identified that ASH has a responsibility to care for children with CM/FTT ‘ because there isn’t anyone else to do it’. Other expectations were to conduct clinical and psychosocial assessments, provide full explanations about the causes and consequences of CM/FTT, provide nutrition education and take more of an advocacy role around social determinants affecting families. Some workers expressed a preference for ASH to notify FACS due to the risk of damaging relationships with families. Some workers highlighted that ASH is sometimes the only intervention families will participate in
• Services are not clear about what the hospital can provide in relation to CM/FTT. There is a need for ASH to be clear about what its role is and to communicate that to other services (Recommendation 2.11)
Elements of successfully working with children with malnutrition/FTT and their families ‘There are multiple risk factors and layers of problems’
Weaning Issues
• Respondents identified a pattern of growth dropping off at 6 months of age and problems with introducing enough food at the weaning (‘sitting up’) stage. Traditional weaning practices such as chewing food up for children and then placing it in children’s mouths are seen as being lost as a result of education about ‘hygiene’. Respondents highlighted a need for weaning education for indigenous mothers, as with all mothers – teaching how to introduce foods to children and how to eat foods out of stores
• The importance of working with views about causation of growth and revisiting misconceptions was highlighted. The need to dispel myths was highlighted eg ‘Anangu babies are skinny’, mothers being scared of introducing solid food before the child has teeth etc
• The difficulty of conveying concerns about growth where children did not look sick was also noted. Respondents stressed that making the case for concerns about growth can be difficult when the link is not always clear to families and growth can be seen as ‘whitefella’ business (Recommendation 2.14)
‘Traditional Aboriginal child rearing’
• Respondent varied in how they weighted the influence of ‘traditional Aboriginal child rearing’ on the development CM/FTT. It was seen as a ‘challenging’ concept, informing and influencing child-rearing practices eg lack of discipline around eating, but it was also seen as an ‘evolving’ practice as culture changes
Relationship building ‘If you respond immediately and flexibly to families needs, then you can begin to work with more complex issues - it takes patience, tolerance, acceptance, a good sense of humour, consistency and continuity’
• Respondents highlighted the need to take time to build relationships of trust and respect and engage with families. Providing practical or financial assistance is seen as providing a way in to develop relationship and build trust. It was seen as important to take the judgement out of CM/FTT and recognise and acknowledge the difficulty in feeding children and the difficulties for women The important of language and/or interpreting support was also stressed
Assessment / early intervention
• Respondents identified the importance of starting early and taking a detailed history- getting to know who’s in the family, having family meetings, getting the appropriate people in the family, not having preconceived ideas about what’s going on for the family and constantly checking assumptions. It was acknowledged that CM/FTT is not simply a matter of providing food and that workers needed to understand issues around children not learning to eat, feeding difficulties, FAS/FASD, premature babies needing catch up growth etc as well as to listen to family’s views about what the problems and solutions are. The importance of ante natal interventions was highlighted
Taking a wholistic approach
• Respondents highlighted the importance of considering the whole picture and assessing the whole community eg money, family structure, intergenerational factors etc rather than focusing on one aspect of the picture
Barriers to maximising service effectiveness for CM/FTT
Complexity of the issue ‘You can teach all you like about good food, but it requires the coordination of so many other factors – stores, housing, money, violence, grog, gambling, death, mental illness, disease, dogs’
• Respondents identified that most of the families they work with have multiple problems which impact on their ability to provide adequate nutritional support for a child eg poverty, poor housing, remoteness, lack of access to healthy and affordable food and substance abuse
• Issues for women were particularly highlighted eg DV and ‘the loss of spirit that women experience when they are living in fear and bullied’, depression and loss impacting on parenting abilities, lack of power, single mothers, isolated young mothers staying with father’s side of family, and lack of good role modelling
Difficulties of engagement with families
• Respondents highlighted that there are often childhood and family stressors that are difficult to resolve (eg sexual assault, domestic violence, family violence), and that families need safety and one to one education and support to deal with complex issues
• Respondents identified difficulties engaging with families around poor growth, including fear of FACS involvement and consequences if children are perceived as neglected, family secrets such as DV or abuse, lack of trust, difficulty communicating and workers asking too many questions, and the mobility of some families making follow up difficult
• Respondents identified a range of social determinants including lack of resources, food security, lack of accommodation and a safe environment, lack of basic cooking equipment, poor understanding the problem, and poor understanding of growth charts
3 Key service or systems gaps in CM/FTT
There are key service or system gaps for children with CM/FTT and their families;
• There are a range of services in remote areas, including primary health care, child care, women’s programs, FACS programs, visiting allied health, paediatric services, and visiting child health services, but these tend to be under resourced and underdeveloped and they are not available across all communities. Overall there is a fragmentation and lack of coherence in service delivery, with communication gaps across services and a lack of joint case planning and case coordination
• There are gaps in the secondary service system response to CM/FTT on remote CA communities, leading to gaps in comprehensive assessment, intervention and referral for children and families. At present it could be argued that ASH is providing a tertiary ‘default’ position for children with CM/FTT in the absence of an adequately resourced primary and secondary referral service system. In WA and SA the situation is ameliorated by NPY and Nganampa child nutrition services, which also work with children at Mt Gillen in Alice Springs. In Alice Springs, CAAC has reoriented its child nutrition services towards an ante natal home visiting model, however children under 2 are still being followed up via paediatric care planning
• There is a need for a renewed focus on GAA action planning, education and training and a prioritising of early interventions for child and maternal health in remote communities
• Interpreter services are not used enough in assessments and interventions at the clinic and hospital level
• There is a need for improved systems for tracking mobile children
• There is a need for improved diagnosis and interventions for micronutrient deficiencies, FAS/FASD and PND
• There is a lack of a town based accommodation and support for parents with children for assessment and therapeutic intervention
• There is a lack of family friendly services in Alice Springs and services that work with men in their role as fathers
• There is a lack of accessible support services for parents – preschool, childcare, playgroups, respite, transport
• Indigenous parents are not accessing universal child and maternal health services in Alice Springs to the extent that they could be
• There are different approaches to treatment of indigenous and non-indigenous children with CM/FTT, resulting in different services being delivered. There are access and equity issues at stake here, and a need to measure the treatment of indigenous children with CM/FTT and their families against what would be expected for the non-indigenous population
4 Appendices
1 Appendix 1 Steering Committee
Heather Grieve- Coordinator, Nutrition and Physical Activity, Health Development and Oral Health
Nettie Flaherty- Topic Coordinator, Remote Child Protection Practice, Centre for Remote Health
Carmel Hattch- Clinical Nurse Manager, Paediatric Outpatients Liaison, ASH
Alina Iser- Paediatrician, ASH
Claire MacVicar- Community Paediatrician, Remote Health
Lorraine Parsons- Senior Social Worker and Acting Director Allied Health, ASH
Rob Roseby- Head of Paediatric Department, ASH
Vicki Taylor- General Manager, ASH
Sandi Tohi- Clinical Nurse Manager, Paediatric Ward, ASH
Andrew White- Community Paediatrician, Remote Health
2 Appendix 2 Stakeholders consulted
Individual consultations
Liz Archer, Community Training Worker, Waltja Tjutangku Palyapayi Aboriginal Corporation
Christine Armstrong, Team Leader, Early Childhood Program, Waltja Tjutangku Palyapayi Aboriginal Corporation
Donna Bradley, Remote Development Officer, Early Childhood, FACS
David Brewster, Professor of Paediatrics, James Cook University
Tracey Broadfoot, Coordinator, Ampe Akwerke, ASYASS
Mel Brown, Quality Manager, ASH
Jill Burgoyne, Health Information Manager, ASH
Tors Clothier, Paediatric Consultant, ASH
Sue Cragg, Youth Team, NPY Women’s Council
Lyn Drury, Social Worker, RDH
Judy Edwards, Bed Manager, ASH
Larissa Ellis, Paediatric Social Worker, ASH
Rose Fahy, Paediatric Consultant, ASH
Debbie Fearon, Paediatric Consultant, ASH
Annette Flaherty, Topic Coordinator, Remote Child Protection Practice, CFRH
Bronwyn Grieve, Paediatric Educator, ASH
Heather Grieve, Coordinator, Nutrition and Physical Activity, Health Development and Oral Health
Jenny Hains, Coordinator, Preventable Chronic Disease Program
Carmel Hattch, CNM, Paediatric Outpatients Liaison, ASH
Alina Iser, Paediatric Consultant, ASH
Margie Lankin, Aboriginal Health Worker, ASH
Kathleen Leahy, Senior Practitioner, Remote Child Protection, FACS
Melissa Lindeman, Director, PHCRED Program, CFRH
Lynne Little, CNM, Child and Family Health Team, Community Health Centre
Stephanie Milosojevic, Educator, FACS
Clare MacVicar, Paediatrician, Community Paediatric Team, Remote Health
Valmai McDonald, Health Promotion Practice Development Officer, Health Development and Oral Health
Judith Myers, Project Officer, National ATSI Nutrition Plan, Heart Foundation
Paul Quinlan, NGO Manager, Remote Health Branch
Elise Rolf, Child Health Nurse, Community Paediatric Team, Remote Health
Rob Roseby, Paediatric Consultant, ASH
Adrian Scholtz, Coordinator, Early Childhood Development Services, Tangentyere Council
Megan Scott, Dietician in private practice
Kerry Taylor, Lecturer, School of Nursing and Midwifery, Flinders University
Jenny Thurley, CNC, Paediatric Outpatients Liaison, ASH
Sandhi Tohi, Paediatric CNM, ASH
Judy Torzillo, Nutrition Support Worker, Nganampa Health Council
Paul Torzillo, Medical Director, Nganampa Health Council
Dale Wakefield, Coordinator, Alice Springs Women’s Shelter
Vikki Wearne, Dietician, RDH
Rebecca Wells, Patient Flow Manager, ASH
Andrew White, Paediatrician, Community Paediatric Team, Remote Health
Group Consultations
Paediatric ward nursing team, ASH, Judy Edwards, Gypsy de Jonge, Jonti Godwin, Annecke Hawke, Linda Riddell, Rebecca Spencer, Julie Stirk, Jenny Thurley, Sandhi Tohi
MC&YH Team, Health Development and Oral Health, Sheryl Alexander, Merrilee Baker, Glenda Gleeson, Julie Hill, Sharyn Hofer, Corrine Leimgruber, Sylvia Palmer, Ruth Primrose, Marion Swift
Child Health Team, CAAC, Carmel Barry, Rachael Lockey, Annie Power, John Smulders, Anissa Thompson
Child Nutrition Team, NPY Women’s Council, Liza Balmer, Suzanne Bryce, Brooke McCallum, Camilla Sleeth
3 Appendix 3 Social Work Procedures
CHILD MALNUTRITION/ FAILURE TO THRIVE PROCEDURES
Preamble:
CM/FTT is a relatively common paediatric condition that places children at physiological and developmental risk. It can be caused by a complex interaction of medical and/or psychosocial factors. Social workers have an important role in advocating for the comprehensive assessment, treatment and support of children with CM/ FTT and their families.
Features of CM/FTT in the NT
Features of malnutrition in children in the NT include;
- High rates of wasting, stunting, microcephaly and iron deficiency
- High rates of hospital admission, mostly from respiratory and enteric infections
- Growth retardation and iron deficiency starting as early as a few months of age and continuing throughout the weaning period
- Growth failure often found in settings of poor hygiene, overcrowded housing and concerns about child care
- Concerns about quality and quantity of weaning diet from 4-24 months
- High burden of diarrhoeal disease
- Asymptomatic intestinal mucosal damage from environmental enteropathy (Brewster et al, 2008)
Definitions and diagnosis:
Malnutrition is defined as;
• suboptimal nutritional health, incorporating undernutrition (poor growth), overnutrition (obesity) and specific micronutrient deficiencies (eg iron, iodine, zinc, vitamin A)
Malnutrition generally refers to undernutrition rather than overnutrition.
Undernutrition is defined as;
• an inadequate intake of protein, energy, and micronutrients, with resulting frequent infections
There is no international consensus on a definition of FTT. FTT is considered a descriptive term rather than a diagnosis. A working definition of FTT is;
• growth deceleration or crossing growth centiles, particularly falling through 2 centile spaces on the standard child growth chart
In general CM/FTT is narrowly medically defined according to a range of measurable growth parameters. The objective measures are usually the deceleration of growth, height and weight, and, if CM/ FTT is severe, poor brain growth as evidenced by head circumference.
It is important to assess the severity of the nutritional state or the degree of CM/FTT (mild, moderate or severe) as this will inform management. The growth deficits used in diagnosing FTT are equivalent to those used to diagnose malnutrition (ie underweight, wasted, stunted).
Anthropometric indicators alone are generally used to diagnose malnutrition in populations, whereas an analysis of the growth pattern over time is used to diagnose FTT in individuals.
It is important that psychosocial and developmental components are included in assessment and planning for CM/FTT. The SW has a role in encouraging a broader view of CM/FTT that is inclusive of the range of psychosocial and structural causes.
Consequences
There is increasing evidence for serious short and long term consequences of undernutrition, including cognitive and educational deficits and the development of adult chronic diseases, particularly cardiovascular disease, type-2 diabetes, and chronic renal. Underweight and stunting are also associated with apathy, less positive affect, lower levels of play and more insecure attachment, problems with conduct, poorer attention, and poorer social relationships at school age than non growth retarded children. Factors impacting on early child development can affect health, well-being and competence across the balance of the life course.
Procedure:
Referrals
All children with a primary and secondary diagnosis of CM/FTT admitted to the paediatric ward should be referred to the social worker in the first 1-2 days of admission.
Assessment
A thorough assessment is critical for children with CM/FTT given the complex causal factors involved.
Elements of assessment should include; medical history to exclude medical causes, feeding and nutritional history, growth and developmental progress, environmental and psychosocial history, maternal medical history, neonatal medical history, postnatal health history, observation of parent-child interaction, feeding observation, assessment of growth and development.
It is the SW responsibility to conduct a detailed psychosocial assessment looking at the functioning of the family, and the child in the context of the family, and including;
• Family structure (genogram)
• Primary carer/ caregivers
• Current and past social history of the family
o Finances and resources
o Living and housing situation
o Childcare arrangements
o Abuse and neglect risk factors, including any physical or sexual abuse
o Domestic or interpersonal violence
o Substance abuse or addiction
o Mental health problems, particularly depression and postnatal depression
o Food security/scarcity
It is important to ask caregivers/family about;
Beliefs about child rearing
• Perception of the child's growth failure and medical condition
• Level of concern about the child
• Concepts about feeding and specific foods
The SW should advocate for appropriate participation of AHW’s, ALO’s, and interpreters in assessments.
It is important to seek objective measures of weight gain, as well as evidence of parental cooperation and change in family functioning. There is a need to strike a balance between waiting for positive change to occur in the child and family, and prompt intervention if the child is at risk. The longer and more severe the poor weight gain, the more serious the consequences, making early identification very important. A thorough assessment itself can provoke change.
SW theoretical approaches that may be useful to consider in working with CM/FTT include an ecological framework, strengths based approach, anti racist frameworks and so on.
Multidisciplinary assessment
A multidisciplinary case planning meeting will be held for each child admitted with a primary or secondary diagnosis of CM/FTT on admission and in discharge planning. A multidisciplinary assessment is critical to the proper diagnosis and treatment of CM/FTT and the SW should advocate for a multidisciplinary approach. Disciplines involved will depend on availability but may include doctors, nurses, social workers, physiotherapist, dietician, psychologist, clinical consultant, occupational therapist, speech therapist. It is important to include caregivers and clinic/community based staff as part of the team where possible.
Intervention
The role of the social worker in relation to CM/FTT is to;
• Provide a biopsychosocial assessment
• Participate in multidisciplinary management plan
• Provide support and education to caregivers/family re
o Adjustment to hospital environment
o Developing a shared understanding about what may be causing or maintaining the child’s poor growth
o Accessing hospital and community resources
o Assisting the parent-child relationship
o Ensuring parents are part of treatment process and that they understand what is going on
o Education re nutrition, feeding, and normal child behaviour and development
• Advocate for caregiver/family’s needs
• Liaise with community agencies
• Ensure proper assessment and intervention before notification to FACS
• Provide a link between medical staff, family and FACS
• Make referrals for follow up
Documentation
The social worker is responsible for accurate documentation of all aspects of their intervention in the progress notes of the medical record.
Discharge/ Follow up
The social worker should advocate for and participate in a multidisciplinary discharge planning meeting comprising ASH team, community paediatric team, caregivers/ family, and relevant remote staff and community-based agencies.
Responsibilities/Reporting:
Mandatory Reporting
Suspicion of child maltreatment must lead to a report to the appropriate child protection agency. A child in the Northern Territory shall be said to have suffered neglect where:
‘..he has suffered serious physical impairment evidenced by severe bodily malfunctioning, because of his physical surroundings, nutritional or other deprivation, or the emotional or social environment in which he is living, or where there is substantial risk that such surroundings, deprivation or environment will cause such deprivation’.
[Community Welfare Act 1983 4(3)(c)]
Notification procedures
• There are no standard referral criteria to statutory authorities as children must be assessed on a case by case basis
• As a general procedure, notifications to statutory authorities will be made in writing by the social worker with input from the multidisciplinary team
• Notifications should documented using the Interagency Child Concern Report Form
• All notifications should be accompanied by a supporting letter from the paediatric consultant outlining any medical concerns and goals for weight gain
• All interventions that have been attempted should be documented including specific nutritional messages and evidence of parental understanding, evidence of parental understanding of the potential adverse consequences to the child, and evidence of parental failure to adhere to nutritional and feeding recommendations
• All notifications should be accompanied by a growth chart
• Notifications to be placed on the child's file in correspondence section with note in file
• Parents will be informed about notification and see a copy of referral letters
• Clinic will be informed about notification and see a copy of referral letters
CM/FTT and Neglect
Child neglect is among the many causes of CM/FTT. The literature identifies a range of risk factors for children with CM/FTT as a result of possible child neglect including parental depression, stress, marital strife, divorce; parental history of abuse as a child; intellectual disability in the parent(s); young mothers without social supports; domestic violence; alcohol or other substance abuse; previous child abuse in the family; social isolation and/or poverty; poor adaptive and social skills; failure to adhere to medical regimens; lack of knowledge of normal growth and development; and/or infant with low birth weight or prolonged hospitalisation.
Additional risk factors identified are intentional withholding of food from the child; strong beliefs in health and/or nutrition regimens that jeopardise a child's well-being; and/or family that is resistant to recommended interventions despite multidisciplinary team input.
Risk factors should be assessed in the context of each family’s unique situation.
Social determinants of health play a significant role in CM/FTT. Poverty is considered a major risk factor, however most poor families do not neglect their children so a sound assessment is important to explain ‘why this child in this family is being neglected’ (Flaherty, 2008)
Children should only be notified once clinicians have identified how parents are contributing to CM/FTT and if they are not willing to take appropriate steps to help their child get well.
Service Development
It is expected that the social worker will participate in at least one professional development activity on the topic of CM/FTT a year. They will also contribute to service development by keeping accurate statistics and by developing and contributing to quality improvement and quality management programs.
Review Process
The procedure will be reviewed every twelve months by the SW team
References:
Black M, Dubowitz H, Casey P, Cutts D, Drewett R, Drotar D, et al. Failure to Thrive as Distinct From Child Neglect. Pediatrics. 2006;117(4):1456-8.
Block R, Krebs N. Failure to Thrive as a Manifestation of Child Neglect. Pediatrics. 2005;116:1234-7.
Brewster D, Nelson C, Couzos S. Failure To Thrive. In: Couzos S, Murray R, eds. Aboriginal Primary Health Care An Evidence-based Approach 3rd, 2008 ed. South Melbourne: Oxford University Press 2008:265-97.
Flaherty N, Goddard C. Still 'neglecting the neglect of neglect': Child neglect and the Little Children Are Sacred Report. Children Australia. 2008;33(1):5-11.
Marino R, Weinman M, Soudelier K. Social Work Intervention and failure to thrive infants and children. Health and Social Work. 2001;26(2):90-7.
Neckoway R, Brownlee K, Castellan B. Is Attachment Theory Consistent with Aboriginal Parenting Realities? First Peoples Child & Family Review. 2007;3(2):65-74.
Taylor J, Daniel B. Interagency Practice in Children with Non-Organic Failure to Thrive: Is There a Gap Between Health and Social Care? Child Abuse Review. 1999;8:325-38.
Susan Grant
Social Worker
Alice Springs Hospital
2008
Appendix 4 File Audit Questions
Number of children in one year (June 2006-July 2007) with a primary or secondary diagnosis of malnutrition/FTT– 50 files
Demographic data
• Age – months
• HRN
• Indigenous status – indig/non-indig
• Where from-
o Alice Springs
o Alice Springs town camps
o Tennant Creek
o Tennant Creek town camps
o Remote CA
o Barkly
o SA
o WA
• No. of addresses - number
• Birth data
o Birth weight-grams
o Birth length – cms
o Head circumference - cms
o Gestation-months
o Maternal age- years
o Birth complications- yes/no
If yes- any or none of
• Congenital anomaly
• Respiratory problems
• Infections
o Maternal Risk Factors – any or none of
• Alcohol
• DV
• Previous FACS involvement
• Lack of family support
• Other substance
• Young mother
• Poor antenatal care
• Other
Prehospital care
• Number of months of CM/FTT prior to admission – months
• Is there a GAA plan- yes/no
• No of services involved in care – any or none of
o Clinic
o Remote DMO
o NPY
o Nganampa
o Congress
o FACS
Hospital Care
• Episode number
• Type of admission for FTT
o Primary diagnosis
o Secondary diagnosis
• Relationship of carer to child-
o Mother
o Father
o Relative
o Primary carer
o FACS foster carer
• Carer present throughout stay – yes/no
• Length of Stay – days
• Involvement in management plan – any or all of
o Paeds Liaison
o Medical
o Nursing
o Nutritionist
o SW
o AHW
o Other
• Change of carer – yes/no
• Types of interventions whilst in ASH
▪ Medical Interventions
o Admission diagnosis
o Categorical definition of malnutrition (mod or severe)
o Growth parameters
Weight in grams Height in cm Head circum in cm SWFA-number SWFH-number(usu b/w 60-100)
o Co morbidities –any or none of
Iron deficiency anaemia
Electrolyte imbalance
Gastroenteritis-organism isolated yes or no If yes-name
Urinary tract infection
CSOM
Skin infection
Respiratory infestion
o Relevant past history-any or none of
List as above
o Treatments –any or none of
Nasogastric freeds
Nasogastric fluids
IV fluids
Antibiotics
o Nosocomial infection yes or no
o D/C weights
o Weight gain during hospitalisation
o Criteria for discharge
o Weight at 3/12 and 6/12 post discharge in grams
o Re-admissions yes or no
If yes FTT or Other Diagnosis
▪ Nursing
o Nursing care plan Y/N
o Food chart
o Education
o Referral
▪ Social Work
o Psychosocial assessment Y/N
o Family meeting
o Housing
o Finances
o DV
o Referral
▪ Nutritionist
o Nutrition assessment Y/N
o Nutrition plan
▪ Paeds Liaison
o Case management Y/N
o Liaison
o Consultancy
o Feeding assessment
o Referral
▪ AHW
o Social support Y/N
o Feeding
o Education
▪ Discharge Planner Y/N
o Accommodation
o Liaison
o Follow up appointments
▪ ALO’s/Interpreters – Y/N
▪ Other (Speech Therapist, OT) – Y/N
▪ FACS Y/N
o First notification
o Previous notification
o family meeting
o holding order
o court order
o foster care
• Discharge plan- Y/N
• Type of discharge
o Home
o Mt Gillen
o TOL
o Other
• Discharged into the care of –
o Mother
o Father
o Relative
o Primary carer
o FACS foster care
• Involvement in discharge plan – any or all of
o Paeds Liaison
o Medical
o Nursing
o Discharge planner
o Nutritionist
o SW
o AHW
o FACS
o Family
• Agencies to which referred for follow up- any or all of
o Paeds Liaison
o Clinic
o NPY
o Nganampa
o Congress
o Safe families
o FACS
5 Appendix 5 File Audit Report
A retrospective file review for the financial year of 2006-7 of all episodes of children aged 3 months to 3 years with a primary or secondary diagnosis of malnutrition or FTT was completed. Using an unbiased selection method a subset of 54 patients, or approximately one third of the total cases for the year, was selected. The review used Australian Coding Standards – ICD-10-AM/ACHI/ACS. Data was extracted from DHF databases by DHF Clinical Information Project staff. Detailed information was read from patients’ care records and recorded in a purpose built database. The file audit has generated a substantial amount of data, which will continue to be analysed for future planning and publication. The following section presents some important preliminary findings.
Out of 54 episodes 31 were female and 23 were male
1 Location by State
The Caresys sample and file audit samples for location were very similar. This shows that the file audit sample was fairly representative of the total sample for the year.
[pic]
Figure 1 Episodes from Caresys
Figure 2 Episodes from file audit
2 Location by urban/remote CA
Two thirds of episodes from CA were admitted from remote communities. This is not surprising given the identified lack of services in remote CA communities.
Figure 3 Locality
3 Primary vs secondary diagnoses of CM/FTT
33% episodes had a primary diagnosis of CM/FTT and 67% had a secondary diagnosis of CM/FTT. This is interesting given that the patient mapping process identified a lack of case planning and significant inconvenience for families and tension amongst staff where children were kept in ASH for treatment of CM/FTT after being admitted for another condition
[pic]
Figure 4 Primary and secondary diagnoses
4 Weight deficits in ASH
Hospitalisation is recommended in cases of severe wasting. However over half (58%) of episodes had mild or no wasting, which is not usually recommended for hospitalisation. This highlights the need for more attention to community-based resources so these children have an alternative to hospital admission. Hospitalisation tends not to be recommended for stunting, as it is a chronic form of malnutrition
[pic]
Figure 5 Wasting
Figure 6 Stunting
5 Weight Gain in ASH
There was a slight but weak correlation between the children who were more wasted putting on more weight in hospital. However we would expect a stronger correlation between the degree of wasting and weight gain in hospital
[pic]
Figure 7 Weight for height
This indicates that there is a slight (R=0.12) trend to positive weight gain related to length of stay.
[pic]
Figure 8 Weight gain during admission
6 Length of stay (LOS)
The mean LOS was 9.5 days, demonstrating that children with a diagnosis of CM/FTT contribute significantly to paediatric bed days
[pic]
Figure 9 Length of stay
7 Number of addresses
There is a high rate of mobility in the paediatric population. In 19 out of 54 episodes there was more than one address documented
8 Months of CM/FTT before admission
There were 28 episodes with 3 or less months of CM/FTT before admission. In 21 episodes there had been 6 months or more of CM/FTT before admission.
9 Pre episode service provision
Only 2 out of 54 episodes had a GAA plan documented
23 out 54 episodes had no pre-episode interventions documented. Where documented, pre episode services were provided by Ngaanyatjarra Health Service, FACS, remote DMO and clinics, Nganampa Health Service and Congress
10 Discharge planning
There is a need for increased multidisciplinary discharge planning and improved documentation of interventions in ASH and referrals
In 26 out of 54 episodes there were no maternal risk factors documented. Only 4 out of 54 episodes had a family meeting documented and less than half (20 out of 54 episodes) had social work intervention documented. Over half (28 out of 54) had paediatric liaison intervention documented
In 49 out of 54 episodes the carer stayed for the whole episode. Most children were discharged with their mother (43 out of 54 episodes), however in 4 episodes the discharge carer was not specified
Most children were discharged to home (38 out of 54 episodes). 4 out of 54 episodes were discharged to Mt Gillen, 1 to foster care, 4 took their own leave and in 4 episodes the discharge destination was not specified
13 out of 54 episodes had no discharge plan documented
[pic]
Figure 10 Episodes with a discharge plan
Where documented there were discharge referrals to Nganampa Health Service, NPY, remote DMO and clinic, FACS and Congress. However 20 out 54 episodes had no specified discharge referrals
11 Readmission rates
Children with CM/FTT have a high burden of disease. Whilst for 18 out of 54 episodes this was the first admission to ASH, 37 out of 54 episodes had had a previous admission (21 with a previous admission for CM/FTT and 16 with a previous admission for another condition)
[pic]
Figure 11 Readmission rates
There was a high rate of co morbidities, with 26 out of 54 episodes with a gastro co morbidity and 20 episodes with an iron deficiency co morbidity. There was only one episode without a co morbidity recorded
6 Appendix 6 Service Provider Questionnaire
Date:
Name:
Organisation:
Govt
Non-govt
Department/Section:
Client group/s:
Geographical area covered:
1. What are the key roles of your organisation/department in relation to child malnutrition/failure to thrive (FTT)?
2. What sort of interventions do you undertake with children with malnutrition/FTT and their families?
3. What informs your approach to FTT (Evidence? Theories?)
4. How are children referred to your organisation?
5. Who do you refer these children to?
6. How do you follow these children up?
7. Who are your key partners in working with child malnutrition/FTT?
8.a Are there any communication/coordination mechanisms in place for working with other organisations? b. Are these effective?
9.Can you identify key service or systems gaps in the area of child malnutrition/FTT?
10.a. How does your organisation interface with Alice Springs Hospital (ASH) in relation to child malnutrition/FTT? b. How could this working relationship be improved?
11. How does the paediatric department at ASH influence your management of FTT?
12. What do you consider to be key components of successfully working with children with malnutrition/FTT and their families?
13. What do you consider to be key barriers to working with children with malnutrition/FTT and their families?
14. Does your organisation provide any education/training in regard to child malnutrition/FTT?
15. What are your training needs in relation to child malnutrition/FTT?
16. What are your own questions about CM/FTT?
17. What other organisations/individuals should the project speak to?
Susan Grant
Project Officer
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