National Drug Strategy
National Drug Strategy

Intergovernmental committee on Drugs working party on Fetal Alcohol Spectrum Disorders

Monograph

Fetal Alcohol Spectrum Disorders in Australia: An Update

June 2012

12. Nationwide Activity on Fetal Alcohol Spectrum Disorders

Elizabeth Elliott, Lucy Burns and Courtney Breen

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Government and nongovernment organisations have initiated a number of treatment programs and research projects since the 2009 Monograph ‘Fetal Alcohol Spectrum Disorders in Australia: An update’ (Burns et al. 2009). A number of initiatives have been funded as indicated below and detailed in Table 12.1. In November 2011, the Australian Government House of Representatives Standing Committee on Social Policy and Legal Affairs initiated an Inquiry into the prevention, intervention needs and management of FASD in Australia. Further information on the Inquiry, including submissions, can be accessed at Parliament of Australia website .

A summary of some of the projects include:

1. Better data collection about alcohol use in pregnancy to assist in identifying at-risk mothers and inform treatment and prevention efforts.

In 2010 Victoria Health funded a project to develop an approach for clinicians and researchers to ask appropriate questions about alcohol use during pregnancy. This project was expanded with funding from the Department of Health and Ageing and the outcomes are documented in Alcohol in pregnancy: what questions should we be asking? (AQUA) (Muggli et al. 2010) (Table 12.1, Study 1).

In 2010 the NHMRC funded a Victorian birth cohort using the questions developed in AQUA to assess outcomes of children exposed to low and moderate levels of alcohol during pregnancy (Table 12.1, Study 2).

The Australian Institute of Health and Welfare’s National Perinatal Epidemiology and Statistics Unit (NPESU) was funded by the Department of Health and Ageing to assess what FASD related information is available in existing data collections (Table 12.1, Study 3).

The NPESU have also developed standard elements to collect self reported data about frequency and amount of alcohol consumed in pregnancy following consultation with a broad range of stakeholders. Consultation is being undertaken to assess the feasibility of introducing these items into the National Perinatal National Minimum Data Set. (Table 12.1, Study 4).

The draft WA FASD Model of Care Implementation Plan (currently under development) considers strategies to measure and record alcohol use in pregnancy. Strategies to date include identifying opportunities for health professionals to record alcohol consumption patterns of pregnant mothers during each trimester, using a modified Audit-C tool. The modified tool would screen levels of risk to developing fetus. It is proposed this information will be collected statewide.

2. Research to accurately determine the prevalence of FASD in Australia.

The Lililwan Project is a research collaboration between Marninwarntikura Women’s Resource Centre and Nindilingarri Cultural Health Services in Fitzroy Crossing and The George Institute for Global Health and the Discipline of Paediatrics and Child Health at the Sydney Medical School, The University of Sydney. The Lililwan Project was initiated by Aboriginal communities in the Kimberly region of WA to determine the prevalence of FASD in remote communities throughout the Fitzroy Valley (Table 12.1, Study 5) (Latimer et al. 2010; Australian Human Rights Commission 2011; Clark 2011; Elliott et al. 2012; Fitzpatrick et al. 2012; Kirby 2012). In 2010 a cohort was identified and a comprehensive multidisciplinary health and development assessment was conducted for each child during 2011 and 2012. The study protocol is outlined in Fitzpatrick et al and analysis of data is currently underway. This project is funded by the Commonwealth Departments of Health and Ageing (DOHA) and Families, Housing, Community Services and Indigenous Affairs (FaHCSIA), the National Health and Medical Research Council (NHMRC) (#1024474), Save the Children, the Foundation for Alcohol Research and Education (FARE), and Australian philanthropists. This project forms part of the Marulu strategy developed by the community to address the diagnosis and prevention of FASD and to support children with FASD and their families (Table 12.1, Study 6).

The prevalence of FASD in Western Australia will also be estimated using cases born in WA between January 1980 and November 2010 and notified to the Western Australian Register of Developmental Anomalies (WARDA) (Table 12.1, Study 7). Birth prevalence will be calculated by year of birth to examine trends over time and demographic characteristics of cases will be described. This project is being conducted at the Telethon Institute for Child Health Research.

A Western Australian data linkage study is investigating the health and social outcomes of children of mothers with an alcohol-related diagnosis, a proxy for heavy alcohol consumption, recorded on health datasets. The children’s birth data has been linked with a range of linked administrative datasets to examine the relationship between heavy maternal alcohol consumption and the health, developmental (intellectual disability, cerebral palsy) (O'Leary et al. 2012), mortality (stillbirth) (O’Leary et al. 2012) and social outcomes (education, justice, child protection) across the lifespan (Table 12.1, Study 8). This research is examining the effect of both heavy prenatal alcohol exposure and the effect of maternal alcohol-use disorders occurring during the early years of their child’s life.
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3. Research into the relationship between alcohol use in pregnancy and FASD in Australia.

The Impact of Parental Alcohol, Tobacco and Other Substance Use on Infant Development and Family Functioning study (also known as The Triple B study: Bumps, Babies and Beyond) was initiated by the National Drug and Alcohol Research Centre and has been funded by the National Health and Medical Research Council (#630517), Rotary, FARE and the University of NSW (Table 12.1, Study 9). The aim of this birth cohort, which includes participants living in NSW and WA, is to examine substance use patterns, including use of alcohol, in a cohort of pregnant women and their partners during the prenatal period. The relationship between drug and alcohol use during pregnancy and infant outcomes is also being examined. Data are also being collected on infant development (physical, cognitive, behavioural and emotional), and family functioning (marital/intimate partner relationship quality, conflict and violence, parenting behaviour and parent–infant relationship quality). To date 1,200 families have been recruited to the study and preliminary data analysis has commenced.

The Victorian birth cohort (AQUA) funded by the National Health and Medical Research Council (#1011070) will examine the association of low to moderate quantities of alcohol intake at various stages of pregnancy and problems in health and development of children at birth and at 12-24 months of age (Table 12.1, Study 2). In this study data are being collected on maternal DNA variations, specific dietary factors or other environmental influences that can moderate the impact of alcohol use in pregnancy.

Data from the Randomly Ascertained Sample of Children born in Australia's Largest State (RASCALS) cohort from Western Australia were linked with health educational data to examine the effect of the dose, pattern, and timing of prenatal fetal effects (Table 12.1, Study 10). The results of this project demonstrated the importance of the pattern and timing of prenatal alcohol exposure on fetal effects (O'Leary et al. 2009; O'Leary et al. 2009; O'Leary et al. 2010; O'Leary et al. 2010; O'Leary et al. 2011). The study is continuing with an investigation of the educational outcomes of children in year 3. The National Drug and Alcohol Research Centre, University of NSW and the University of Sydney have initiated a systematic review of the literature for interventions to prevent alcohol use in pregnancy with particular reference to programs that address prevention in high risk groups.

4. Guidelines for managing children with FASD in Australia.

Protocols for two systematic reviews to inform management guidelines have been approved by the Cochrane Collaboration. One protocol, which was recently published, outlines the review that will be undertaken of pharmacological interventions for ADHD symptoms in children with FASD (Peadon et al. 2012). The other will examine the efficacy of nonpharmacological interventions available for children with FASD. The emphasis will be on identifying high quality evidence for interventions based on data from randomised controlled trials. This work builds on previous work by Peadon and colleagues (Peadon et al. 2008). (Table 12.1, Study 11).

The Strengthening Links program in South Australia is managed by the Women’s and Children’s Hospital in collaboration with Drug and Alcohol Services South Australia and other social and community agencies. This is an antenatal program which aims to support vulnerable women during pregnancy as identified during assessments at antenatal appointments. The program aims to increase the safety and wellbeing of the unborn infant in vulnerable circumstances through assessment, hospital and community engagement, support, care planning and referral to community services. The Women’s and Children’s Hospital social workers collaborate with Drug and Alcohol Services South Australia for relevant treatment and support. The program is governed by a number of guidelines including a nursing and clinical antenatal model of care, referral and assessment pathways and agency partnership arrangements.

5. Diagnosis of FASD in Australia.

In a recent editorial, Mutch and colleagues recommended the adoption of the University of Washington criteria for the diagnosis of FASD in Australia (Mutch et al. 2009).

In 2010 the Department of Health and Ageing funded the Australian FASD Collaboration to review international criteria and clinical guidelines for the diagnosis of FASD and to recommend a screening and diagnostic tool for Australia (Table 12.1, Study 12). Following review of the literature, a modified Delphi process was used to obtain information from health professionals regarding their diagnostic and screening practices. Information was also collected on their agreement with diagnostic criteria included in published guidelines used internationally and their preferences for diagnostic criteria to be used in Australia. A report has been submitted to the Department of Health and Ageing based on the findings. This includes the agreed diagnostic criteria and diagnostic instrument for FASD in Australia that now requires testing and validation in the Australian setting. The initial paper from this study has recently been published (Watkins et al. 2012).

A model of care has been developed proposing practice interventions to prevent and manage FASD in Western Australia (Department of Health Western Australia 2010). An across sector, state-wide Implementation Plan for the Model of Care is currently under development. It includes strategies across the continuum of care to prevent and manage FASD symptoms based on public health principles and which consider issues of access, equity and the current resource and workforce environments in WA. The development of diagnostic and treatment pathways for metropolitan and country regions, including the development of workforce capacity are considered in the Plan.

6. Training of service providers to support prevention and intervention responses to FASD

Following surveys of health professionals that suggested a lack of knowledge and inadequate skills to diagnose and manage alcohol use in pregnancy and FASD (Payne et al. 2005; Elliott et al. 2006; Peadon et al. 2007), Payne and colleagues developed educational resources for distribution in Western Australia. An evaluation of the resources was undertaken and assessed paediatricians and other health professionals’ knowledge, attitudes and practice about prenatal alcohol exposure and FASD (Payne et al. 2011; Payne et al. 2011) (Table 12.1, Study 14). Many of the recipients rated these resources positively. Compared to previous surveys, a greater proportion of health professionals asked women about alcohol use in pregnancy and advised women that the safest option was not to use alcohol. A greater number of professionals also reported greater confidence in making the diagnoses of FASD and fewer identified the need for resources for themselves and their clients. Resources for health professionals are also freely available online. alcoholpregnancy.childhealthresearch.org.au/alcohol-and-pregnancy-resources.aspx (This website link was valid at the time of submission)
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In 2010 the Department of Health and Ageing funded the National Drug Research Institute in Perth to carry out a research project on the development of templates of resources that will: provide Aboriginal and Torres Strait Islander women, men and communities with culturally
appropriate templates of resources about the risks of alcohol consumption during pregnancy and breastfeeding; and assist health professionals in Aboriginal and Torres Strait Islander health care settings address the issues of alcohol, pregnancy and FASD (Table 12.1, Study
15).

In 2011 the Australian General Practice Network revised the Alcohol in Pregnancy Lifescripts. The Lifescripts project involved the development and dissemination to general practitioners of information regarding alcohol in pregnancy for use with patients in general practice. After the assessment women identified as being at risk from alcohol-related harms are given advice and referred for follow up as necessary.

In 2011 the Foundation for Alcohol Research and Education (FARE) funded the National Drug and Alcohol Research Centre to identify best practice care for pregnant women, including women who are alcohol dependent or drinking at risky levels (Table 12.1, Study 16). This project includes a review of the literature on treatment for alcohol dependence in pregnancy. In addition, clinicians will be interviewed about their current treatment practices and suggestions for improvement to services. Interviews with women will also be conducted to document their experiences of treatment of alcohol-related disorders in pregnancy and to seek feedback on how services could be improved.

The Western Australian Drug and Alcohol Office’s ‘Strong Spirit Strong Future- Promoting Healthy Women and Pregnancies’ project includes the development and delivery of training and education for health professionals and other workers. The project aims to improve professional awareness, competence and confidence to deliver evidence-based culturally secure early interventions, treatment and referral to Aboriginal women with respect to alcohol and other drug use in pregnancy and FASD.

Drug and Alcohol Services South Australia (DASSA) in conjunction with University of Adelaide has produced a number of clinical resources relating to alcohol use during pregnancy. These include the ‘Alcohol, Tobacco and Other Drugs: Clinical Guidelines for Nurses and Midwives’ which has an accompanying framework for policy and standards and a training package. DASSA has also produced the booklet titled – Fetal Alcohol Spectrum Disorders: A Guide for Midwives. This publication includes information on prevention strategies, alcohol assessment procedures and brief intervention approaches.

In terms of jurisdictional activity Action 18 of the ACT Alcohol, Tobacco and Other Drug Strategy 2010-2014 is to “Implement national clinical guidelines for the management of drug use during pregnancy, birth and the early years of the newborn.” The action requires that a best practice guide be developed for ACT ATOD services working with pregnant women, families with young children. Development of the Guide is expected to be completed in 2013.

7. Community education to raise awareness of the potential harms associated with alcohol use during pregnancy.

Two films have been developed in association with the Lililwan Project. ‘Marulu’ highlights the need for action on FASD in the remote Indigenous communities of the Fitzroy Valley WA (Clark 2011). ‘Tristan’ follows the life of a boy with FASD living in the Fitzroy Valley. It was made to raise awareness of the challenges faced by such children and their families. Both films were supported by philanthropic donations. Tristan was launched in Sydney in April 2012 by the Governor General who is the patron of the National Organisation for Fetal Alcohol Syndrome and Related Disorders (NOFASARD). It was shown at the United Nations Permanent Forum for Indigenous Issues in New York in May 2012. A DVD for professionals dealing with FASD will be made to complement this film with a contribution from the Foundation for Alcohol Research and Education (FARE).

France and colleagues conducted research to examine different methods for promoting abstinence from alcohol during pregnancy. A media campaign, promoting the ‘No Alcohol in Pregnancy is the Safest Choice’ message has been launched recently. Television advertisements will be run in Western Australia in conjunction with targeted online digital advertising. The campaign is the first of its kind in Australia and based on research with woman in Perth conducted by France and colleagues at Edith Cowan University (Table 12.1,
Study 17). For more information please visit - Western Australia Ministerial Media Statements website .

In 2012 the Foundation for Alcohol Research and Education (FARE) funded a media campaign in the Kimberley and Pilbara Regions of Western Australia. The project aims to raise awareness in the Indigenous Kimberley community of the preventative measures and outcomes of FASD through a media promotions strategy incorporating television and radio adverts focused on FASD (Table 12.1, Study 18).

The Western Australian Drug and Alcohol Office initiated ‘The Strong Spirit Strong Future- Promoting Healthy Women and Pregnancies’ project with funding from the Council of Australian Governments (COAG). The Western Australian FASD Prevention Aboriginal Consultation Forum was held in 2010 and sought the input and guidance of senior Aboriginal professionals, Aboriginal community members, and people who provide services to Aboriginal people. This included discussion regarding the development, consultation framework and direction of the project (Drug and Alcohol Office 2011). This prevention project is designed for Aboriginal people and communities to raise awareness of the NHMRC’s 2009 guidelines on alcohol use when planning a pregnancy, during pregnancy and when breastfeeding.
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It involves the development of culturally sensitive resources, a community awareness media campaign and training and education for health professionals and other workers. In addition, the project provides access to small grants to enable communities to localise resources and develop capacity to respond to local needs. (Table 12.1, Study 19)

The Western Australian Drug and Alcohol Office also launched the ‘’No Alcohol During Pregnancy is the Safest Choice’’ campaign in 2012. This mainstream campaign promotes the message that no alcohol is the safest choice when pregnant or planning a pregnancy to the
primary target group of women of child-bearing age (25-39 years). The campaign is based on the findings from a National Health and Medical Research Council and Healthway joint funded formative research project. The research was conducted to develop and test messages suitable for a mass media campaign targeting women who may consume low to moderate levels of alcohol during pregnancy. It promoted the NHMRC low risk drinking guideline regarding alcohol use during pregnancy. See Alcohol Think Again website. A commissioned evaluation showed that overall, the alcohol and pregnancy campaign performed strongly on a range of key advertising metrics.

The National Drug Research Institute has been funded by the Department of Health and Ageing to develop culturally appropriate resources to assist health professionals in Aboriginal and Torres Strait health care settings to address the issues of alcohol and pregnancy and Fetal Alcohol Spectrum Disorders (FASD).

In July 2012, the NSW Ministry of Health launched a social marketing campaign; “Stay Strong and Healthy - it's worth it". The campaign specifically aims to raise awareness of Aboriginal pregnant women and their partners and families of the risks of drug and alcohol
consumption during pregnancy, as well as the potential challenges of dealing with a mental illness at this time.

Developed in consultation with Aboriginal child and maternal health, drug and alcohol and mental health professionals the campaign involved radio, print and online advertising, Stay Strong and Healthy it's worth it Facebook page, postcards and an illustrated storybook. The tone and content of the storybook format cartoon resonated with the target audience, speaking in appropriate language and not causing shaming, or authoritative lecturing. The campaign also encourages women to seek the support of friends, family, GPs and other professional services when they are pregnant or have a new baby.

Another key strategy to address the difference in health outcomes between Aboriginal and non-Aboriginal women and babies in NSW, and a key part of the NSW Government’s commitment to closing the gap in life expectancy between Aboriginal and non-Aboriginal Australians, is the Aboriginal Maternal and Infant Health Service (AMIHS).

AMIHS builds on universal maternity services that are available in NSW while adding an innovative approach to make these services more accessible and appropriate for Aboriginal women. This involves midwives working together with Aboriginal Health Workers in small
teams to provide a high quality service that is culturally sensitive, woman centred, based on primary health care principles, and provided in partnership with Aboriginal people.

All AMIHS services include activities aimed at reducing maternal alcohol consumption, for example, the use of FASD simulator dolls, use of local information (eg. "When you drink alcohol ...so does your Boori" brochure), and referral to family support services that help reduce stresses that may be contributing to maternal drinking.

A number of AMIHS resources have been developed that contain culturally appropriate information about FASD. These include the Strong Women Strong Babies Pregnancy Diary and the “Stay Strong and Healthy - it’s worth it” prenatal mental health and drug and alcohol
social marketing campaign (2012-2013).

Within the Closing the Gap initiatives, a number of new programs are being implemented to support AMIHS programs. These programs include secondary mental health, and drug and alcohol services in selected AMIHS sites.

8. Research into the development and evaluation of programs and services for individuals with FASD and their families.

There is limited documented information on the resources available for the diagnosis and management of FASD and the service requirements of families affected by FASD. In 2011 the Foundation for Alcohol Research and Education (FARE) funded the National Drug and Alcohol Research Centre to characterise the service use, needs and issues involved for families caring for children and adults affected by FASD (Table 12.1, Study 20). Qualitative interviews have been conducted with carers from across Australia. The study will be extended in collaboration with the Australian Paediatric Unit, to evaluate the financial and psychosocial impacts of FASD on individuals and their families.

The Foundation for Alcohol Research and Education (FARE) has also funded an evaluation of available resources that provide information and support for parents and carers of children with FASD (Table 12.1, Study 21). The study is being conducted through the Telethon
Institute of Child Health Research. In addition to documenting resources currently available for parents and carers it will investigate specific information needs.

In 2011 the Foundation for Alcohol Research and Education (FARE) funded the Telethon Institute of Child Health Research to conduct interdisciplinary research on the knowledge, attitudes and practice of FASD within the WA criminal justice system (Table 12.1, Study22).
In this study the training and information needs of professionals working within the criminal justice system with people who have FASD will be investigated. A similar study has been funded by FARE to examine the knowledge and training deficits of professionals working in
the Queensland criminal justice system. It is being conducted through the University of Queensland Centre for Clinical Research (Table 12.1, Study 23).

In 2012 the Foundation for Alcohol Research and Education (FARE) funded the National Organisation for Fetal Alcohol Syndrome and Related Disorders (NOFASARD) to develop a FASD training program in Tasmania aimed at building the capacity of service providers in the
child protection sector to support carers of individuals living with FASD (Table 12.1, Study 24).
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Table 12.1 Recent and current FASD related research in Australia



S.noProject TitleAims of projectResearcher institution, contacts and fundersStatus and
location
1Alcohol in Pregnancy:
What questions should
we be asking?
To identify or develop a tool for the assessment of alcohol intake in
pregnancy in routine clinical practice.
Murdoch Children’s Research Institute (MCRI)
Contact: Evi Muggli
Email: Evi Muggli
Funded by: Australian Government Department of Health and
Ageing (DOHA)
Completed National Report available at:
www.alcohol.gov.au/internet/alcohol/publishing.nsf/Content/alc-preg-qudoc (This website link was valid at the time of submission)
2Asking Questions
about Alcohol in
Pregnancy (AQUA)
To determine whether low to moderate alcohol intake at various stages
of pregnancy are associated with adverse health and development
outcomes at birth and for young children at 12-24 months of age. To
investigate whether maternal DNA variations, specific dietary factors or
other environmental influences can modify the impact of fetal exposure
to low to moderate quantities of alcohol in pregnancy.
A sample of 2,000 pregnant women will be recruited to participate in this
project.
Murdoch Children’s Research Institute
Aqua Study
Contact: Jane Halliday or Evi Muggli
Email: Aquastudy
Funded by: NHMRC Project Grant (1011070) 2011-15
Current
2011-2014
Victoria
3Assessing fetal alcohol
spectrum of disorders
data collection in
Australia
To assess FASD related information in existing data collections.
Undertaken by the National Perinatal Epidemiology and Statistics Unit
(NPESU).
AIHW National Perinatal Epidemiology and Statistics Unit (NPESU), University of New South Wales, on behalf of AIHW
Contact: Lisa Hilder or Michelle Bonello
Funded by: Australian Government Department of Health and
Ageing (DOHA)
Pending
finalisation of
the report
2010 – 2011
National
4Standard collection of
information about
maternal alcohol use in
pregnancy
Standard elements to collect self reported data about frequency and
amount of alcohol consumed in early and late pregnancy have been
developed following consultation with a broad range of stakeholders.
Consultation is being undertaken to assess the feasibility of introducing
these items into the National Perinatal National Minimum Data Set.
Note: The National Perinatal National Minimum Data Set is a
population-based data collection of pregnancy and childbirth as defined
in the National Health Data Dictionary.
AIHW National Perinatal Epidemiology and Statistics Unit
(NPESU), University of New South Wales, on behalf of AIHW
Contact: Lisa Hilder or Michelle Bonello
Funded by: The Council of Australian Governments (COAG)
Current
National
5The Lililwan Project -
tackling fetal alcohol
spectrum disorders
To undertake a prevalence study of FASD in the Fitzroy Valley. as part
of a broader strategy to address the diagnosis and prevention of FASD
and support of affected children and their families. The study was
initiated by Indigenous women June Oscar and Maureen Carter and
supported by community leaders in the Fitzroy Valley, A partnership
was formed between the Nindilingarri Cultural Health Services,
Marninwarntikura Women’s Resource Centre, the George Institute for
Global Health and the Discipline of Paediatrics and Child Health at the
University of Sydney Medical School to conduct the Lililwan project.
Lililwan is a Kriol, or Aboriginal English word meaning ‘little ones or
children’.
Nindilingarri Cultural Health Services and Marninwarntikura
Women’s Resource Centre, the George Institute for Global
Health and the Discipline of Paediatrics and Child Health at the
University of Sydney Medical School
Contact: Professor Elizabeth Elliott
Funded by: DOHA, FaHCSIA and NHMRC #1024474, Save
the Children Australia, FARE and Australian philanthropists.
Current
2010-2013
Western
Australia
6Marulu Film ProjectTo produce a documentary and an educational film to raise awareness of
FASD and their impact on children, their parents and carers, and whole
communities.
A group of Indigenous leaders has partnered with experts in Indigenous
health, paediatric medicine, human rights advocacy, child protection and
a world-class production company to progress a community-led strategy
developed to address FASD in the Fitzroy Valley of WA.
The strategy, Marulu, has three components: diagnosis and prevention of
FASD, support for parents and carers of children with FASD, and
advocacy and awareness-raising about FASD. In line with the third
component of the strategy the project team will produce two films to
raise awareness of FASD and their impact on the lives of children living
in the Fitzroy Valley.
The George Institute for Global Health
Website - The George Institute for Global Health
Contact: Associate Professor Jane Latimer
Funded by: the DOHA, FaHCSIA and NHMRC.
Save the Children Australia, FARE, and Australian
philanthropists also provided support.
Current
2011-2013
Western
Australia
7Prevalence of FASD in
Western Australia
To determine the prevalence of FASD in WA.
This study will use un-named information on all cases of Fetal Alcohol
Syndrome (FAS) notified to the Western Australian Register of
Developmental Anomalies (WARDA), born in WA from 1980 to
November 2010. Birth prevalence per 1000 births will be calculated by
year of birth to examine trends over time. Prevalence ratios will be used
to describe the demographic and clinical characteristics, such as maternal
age, socio-economic status and place of residence, and age of the child
when FAS was diagnosed.
Telethon Institute for Child Health Research
Contact: Clinical Professor Carol Bower
Funded by: NHMRC Program Grant #57274
Current
2011 – 2013
Western
Australia
8Population based data
linkage study
To identify the proportion of children in Western Australia harmed by
maternal alcohol use disorder and to assess their risk of poor health and
social outcomes.
The cohort comprises all mothers with an alcohol-related diagnosis
recorded on health datasets and a randomly selected comparison group of
mothers without an alcohol diagnosis who are recorded as giving birth in
between 1983-2007 in the Midwives Notification System. The children’s
data have been linked with a wide range of health and social datasets
Curtin University
Contact: Dr Colleen O’Leary
Dr O’Leary is supported by an NHMRC Public Health
(Australia) Fellowship, #594451.
Current
2010- 2013
Western
Australia
9Triple B study: Bumps
Babies and Beyond
The three aims of this longitudinal birth cohort study are:
To identify substance use patterns in a cohort of pregnant women and
their partners during the prenatal period and the characteristics
associated with substance use.
To examine the relationship of maternal and paternal substance use with
pregnancy outcomes for mothers and their infants.
To determine the extent to which substance use in pregnant women and
their partners predicts problems in (a) infant development (physical,
cognitive, behavioural and emotional), and (b) family functioning
(marital/intimate partner relationship quality, conflict and violence,
parenting behaviour and parent–infant relationship quality).
National Drug and Alcohol Research Centre, UNSW
ndarc.med.unsw.edu.au/project/impact-parental-alcoholtobacco-and-other-substance-use-infant-development-andfamily
(This website link was valid at the time of submission)
Contact: Dr Delyse Hutchinson
Funded by: NHMRC Project Grant #630517, Rotary, FARE and
UNSW Gold Star Award
Current
2010 -2014
New South
Wales and
Western
Australia
10Population based data
linkage study
To identify the effect of the dose, pattern, and timing of prenatal alcohol
exposure and educational outcomes for children in year. Data from the
Randomly Ascertained Sample of Children born in Australia's Largest
State (RASCALS) cohort from Western Australia have been linked with
educational data to examine the effect of the dose, pattern, and timing of
prenatal alcohol and educational outcomes at year 3.
Curtin University
Contact: Dr Colleen O’Leary
Dr O’Leary is supported by an NHMRC Public Health
(Australia) Fellowship, #594451.
Current
2010-2013
Western
Australia
11Cochrane
Collaboration
systematic reviews:
FASD interventions
To review the published literature for the efficacy of pharmacological
and non- pharmacological interventions for FASD. Two protocols have
been approved by the Cochrane Collaboration.
Contact: Professor Elizabeth Elliott
or Dr Elizabeth Peadon
Professor Elliott is supported by an NHMRC Practitioner
Fellowship # 457084 and 1021480
Current
12Development of a
screening-diagnostic
instrument for FASD in
Australia
To develop an instrument that can be used to improve the identification
and/or diagnosis of FASD in Australia.
Australian FASD Collaboration includes health professionals,
researchers and consumer and community members.
The lead researchers were from the Telethon Institute for Child
Health Research and the University of Sydney.
Contact: Clinical Professor Carol Bower
or Professor Elizabeth Elliott
Funded by: DOHA
Pending
finalisation of
report
2010 – 2011
National
13Development of the
first screening and
diagnostic service for
FASD in NSW
To establish the first diagnostic clinic for FASD in Australia by a
collaboration of health professionals, researchers, community
organisations and government.
The Children’s Hospital at Westmead
Contact: Professor Elizabeth Elliott
or Dr Elizabeth Peadon
Funded by: FARE
Current
2011-2013
New South
Wales
14Development of
educational resources
for health professionals
To develop a resource to support health professionals address the issue
of alcohol use in pregnancy.
Telethon Institute for Child Health Research
Contact: Jan Payne or
Clinical Professor Carol Bower
Western
Australia
15National Indigenous
Fetal Alcohol Spectrum
Disorders (FASD)
resources project
To provide Aboriginal and Torres Strait Islander women, men and
communities with culturally appropriate templates of resources about
alcohol, pregnancy and FASD.
To develop templates that can be used in the production of culturally
secure and appropriate resources to assist health professionals in
Aboriginal and Torres Straight health care settings across Australia to
address the issues of alcohol, pregnancy and FASD.
To roll out a national train-the-trainer program for ensuring workforce
development and dissemination and uptake of the FASD templates of
resources across Australia.
National Drug Research Institute
http://www.healthinfonet.ecu.edu.au/key-resources/programsprojects?pid=1013 (This website link was valid at the time of submission)
Contacts : Lynn Roarty or Kate Frances
Funded by : DOHA
Current
2010 -2012
Western
Australia
/National
16Improving services for
pregnant women
dependent on alcohol
To improve treatment practices of chronic alcohol dependence in
pregnancy.
This study will examine attitudes to FASD, problems in identification
and diagnosis and other barriers in accessing services.
Through this project, a new resource will be produced for use by
clinicians to improve practices in the management of alcohol dependence
in pregnancy
National Drug and Alcohol Research Centre
Contact: Dr Lucy Burns or
Dr Courtney Breen
Funded by: FARE
Current
2011-2012
New South
Wales
17Alcohol and
Pregnancy: Health
Promotion Messages
that Work
To develop a range of messages about alcohol use in pregnancy suitable
for a communication campaign for women of childbearing age, pregnant
women and women planning a pregnancy.
To identify the messages that most effectively increase the intentions of
women of childbearing age, pregnant women and women planning a
pregnancy to reduce or abstain from alcohol during pregnancy.
Edith Cowan University
Contact: Dr Kathryn France or
Professor Rob Donovan
Funded by: Healthway
2009-2010
Western
Australia
18Media Campaign on
Fetal Alcohol Spectrum
Disorder (FASD) in the
Kimberley and Pilbara
Regions
To undertake a media promotions strategy incorporating television and
radio adverts focused on FASD. This is aimed at raising awareness in the
Indigenous Kimberley community of the preventative measures and
outcomes of FASD.
Broome Aboriginal Media Association trading as Goolarri
Media Enterprises
Contact: Kira Fong
Funded by: FARE
Commenced
April 2012
Western
Australia
19The Strong Spirit
Strong Future-
Promoting Healthy
Women and
Pregnancies project
To raise awareness of the National Health and Medical Research
Council's (NHMRC) 2009 guidelines about alcohol use when planning a
pregnancy, during pregnancy and when breastfeeding. This prevention
based project, designed for Aboriginal people and communities includes
the following strategies:
  • development of culturally secure resources
  • community awareness media campaign
  • training and education for health professionals and other workers.
Government of Western Australia, Drug and Alcohol Office
Contact: Government of Western Australia, Drug and Alcohol Office
Funded by: The Council of Australian Governments (COAG)
Current
2010 – 2014
Western
Australia
20Improving services to
families affected by
FASD
To establish a benchmark for service delivery for families affected by
FASD. To date, there has been little systematic work undertaken with the
families of children with FASD to determine their experiences and
needs. This is of critical importance, given that FASD is a lifelong
disability requiring constant care by parents and carers.
Research will be undertaken with families to determine their experiences
in raising children with FASD through semi-structured interviews.
National Drug and Alcohol Research Centre
Contact: Dr Lucy Burns or
Dr Courtney Breen
Funded by: FARE
Current
2011-2012
National
21Screening and
Diagnosis of Fetal
Alcohol Spectrum and
Related Disorders in
Children in State Care;
and evaluation of
information and
support for parents and
carers of children with
a FASD
To determine the prevalence of FASD in a cohort of children aged
between birth and 12 years and living in the Perth metropolitan area,
who are placed in state care over a 12 month period, to screen this
population for developmental delays and learning difficulties and to
coordinate further assessment and therapeutic and educational
interventions.
To evaluate currently available FASD resources and information for
parents and foster carers. To evaluate currently available FASD
resources and information for key government and non-government
foster care and support agencies. To investigate specific information
needs of parents and foster carers of children with a FASD
Telethon Institute for Child Health Research
Contacts: Dr Amanda Wilkins or
Heather Jones
Funded by: FARE
Current
2011 – 2012
Western
Australia
22Interdisciplinary
research on the
knowledge, attitudes
and practice of FASD
within the WA criminal
justice system
To find out what people within the justice sector know about FASD,
their attitudes towards children and adolescents who may have FASD,
and their current practices in dealing with FASD.
To identify the training and information needs relating to FASD within
the justice system, so that people with FASD may receive appropriate
consideration within the justice system and referral for appropriate
services within and outside the justice system.
Telethon Institute for Child Health Research
Contacts: Dr Raewyn Mutch or
Heather Jones
Funded by: FARE
Current
2011 – 2012
Western
Australia
23The medical,
developmental,
educational and social
consequences of
FASD: A survey of the
knowledge and training
deficits within the
Queensland criminal
justice agencies in
regards to FASD
To inform and provide the impetus to reform the policing, judicial and
corrections systems while optimising effective service delivery, and
contribute to the development of appropriate rehabilitation, support and
management strategies for people with FASD and their families.
Researchers will survey the knowledge, attitudes, practices and training
deficits within Queensland criminal justice agencies in regards to FASD.
Survey data will be collected from representatives from probation and
parole services, correctional services, the police service, lawyers,
judiciary, defence counsel, legal aid and other staff as appropriate. The
survey results will inform recommendations for training across the
Australian criminal justice sector.
The University of Queensland Centre for Clinical Research
Contact: Professor Heather Douglas
or Dr Jan Hammill
Funded by: FARE
Current
2011-2012
Queensland
24Fetal Alcohol Spectrum
Disorder (FASD)
Training Program
To develop a FASD training program aimed at building service provider
capacity in the Child Protection sector to support those who care for
children living with FASD.
National Organisation for Fetal Alcohol Syndrome and Related
Disorders (NOFASARD)
Contact: Vicki Russell
or
Sue Miers
Funded by: FARE
Commenced
March
2012
Tasmania
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