Other projects and initiatives

This section includes projects being conducted around Australia which may not include Telethon Kids Institute staff.

 

 

Anyingyi Health Aboriginal Corporation - FASD Project

 

Alcohol in Pregnancy: What questions should we be asking

 

Alcohol and Pregnancy Advertisement

 

Asking questions about Alcohol in Pregnancy

 

Development of the first screening and diagnostic service for FASD (NSW) 

 

FASD Training Program for Service Providers 

 

FASD Peer Education Project

 

Improving services for pregnant women dependent on alcohol

 

Improving services to families affected by FASD

 

Marulu Strategy and The Lililwan Project

  

National Indigenous Foetal Alcohol Spectrum Disorders (FASD) resource project

 

No Safe Amount - The Effects of Alcohol in Pregnancy

  

Ord Valley Aboriginal Health Service - FASD Program

 

Strong Spirit Strong Future

 

The medical, developmental, educational and social consequences of FASD: A survey of  the knowledge, attitudes and practices  and training deficiencies within the Queensland criminal justice agencies in regards to FASD

  

WA FASD Model of Care

 

 

 

 

 

Alcohol in Pregnancy: What questions should we be asking?

Murdoch Childrens Research Institute

Report to to the Commonwealth Department of Health and Ageing March 2010

 

 

Asking Questions about Alcohol in Pregnancy (AQUA)

Murdoch Childrens Research Institute

We are collecting detailed information about alcohol drinking in pregnancy from a large group of pregnant women to assess the effect of different amounts of alcohol and on the unborn child. We are also collecting information on things that might influence the effects of alcohol such as diet, medication and body size.

 

The aims of this project are to find out whether:

  • low to moderate quantities of alcohol at various stages of pregnancy are associated with problems in the health and development of young children at birth and at 12-24 months of age and
  • maternal DNA variations, specific dietary factors or other environmental influences can affect the impact of low to moderate quantities of alcohol in pregnancy

 

Read more about this project    

 

 

Marulu - tackling fetal alcohol spectrum disorders

Initiated by indigenous women June Oscar and Emily 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 undertake a prevalence study of FASD. Lililwan is a Kriol, or Aboriginal English word meaning 'little ones or children'.

Read more

 

Marulu - Lililwan FASD Prevalence Project
Funding

NHMRC, Department of Health and Ageing, Department of Families and Housing, Community Services and Indigenous Affairs, philanthropic funding, Ashurst, Save the Children Australia, FARE.

 

Researchers

Chief Investigators: Professor Elizabeth Elliott, Dr James Fitzpatrick, Professor Jane Latimer, Winthrop Research Professor Carol Bower, Ms June Oscar, Ms Maureen Carter

 

Other investigators: Dr Rochelle Watkins, Assoc/Prof Alexandra Martiniuk, Emily Carter, Marmingee Hand, Dr Manuela Ferreira, Dr Heather Carmichael Olsen, Barbara Lucus, Robyn Doney, Clair Salter, Dr Elizabeth Peadon, Genevieve Hawkes

 

Objectives

Summary

Stage 1 of the Lililwan Project (2010), and involved collecting information about pregnancy, birth and early childhood from parents and carers of all children born in the Fitzroy Valley in 2002 and 2003, and reviewing their health records.

 

Stage 2 (2011) involved determining the prevalence of FASD by performing multidisciplinary clinical assessments on the cohort. The assessment team included a paediatrician, psychologist, audiologist, ophthalmologist and allied health clinicians. Each child was given a personalised FASD management plan involving their families, doctors and teachers.

 

Stage 3 (2012-2014) involves data analysis and write-up of results relating to the prevalence study.

 

Publications

The Lililwan Project: study protocol for a population-based active case ascertainment study of the prevalence of fetal alcohol spectrum disorders (FASD) in remote Australian Aboriginal communities
James P Fitzpatrick, Elizabeth J Elliott, Jane Latimer, Maureen Carter, June Oscar, Manuela Ferreira, Heather Carmichael Olson, Barbara Lucas, Robyn Doney, Claire Salter, Elizabeth Peadon, Genevieve Hawkes, Marmingee Hand. BMJ Open 2012;2:e000968.doi:10.1136/bmjopen-2012-000968

 

Development of a reliable questionnaire to assist in the diagnosis of fetal alcohol spectrum disorders (FASD). Fitzpatrick HP, Latimer J, Ferreira M, Martiniuk AL, Peadon E, Carter M, Oscar J, Carter E, Kefford M, Shandley R, Yungabun H, Elliott EJ. BMC Pediatrics (2013) 12 3 33

 

The Bruininks-Oseretsky Test of Motore Proficiency-Short Form is reliable in children living in remote Australian Aboriginal communities. Lucas BR, Latimer J, Doney R, Ferreira ML, Adams R, Hawkes G, Fitzpatrick JP, Hand M, Oscar J, Elliott EJ. BMC Pediatics (2013) 13 135.

 

There's Hope in the Valley. Elliott EJ, Latimer J, Fitzpatrick J, Oscar J, Carter M. Journal Paediatrics and Child Health (2012) 48(3):190-2

 

Films and DVDs

 

Yajilarra

Yajilarra is a documentary (director, Melanie Hogan, 2009, 26 minutes) about a group of Aboriginal women from Fitzroy Crossing in remote northern Western Australia. The short film, which was produced by the Marninwarntikura Women's Resource Centre of Fitzroy Crossing, premiered at the United Nations Commission on the Status of Women in New York in 2009 where it received a standing ovation.

 

Order DVD through Marninwarntikura Fitzroy Women's Resource Centre
Phone:08 9191 5284/Fax:08 9191 5611/Email 

 

Interview with June Oscar and Marmingee Hand

This interview was given in prior to launch of 'Tristan: Hopes, dreams and challenges of a young boy living with a FASD' DVD 

 

Tristan: Hopes, dreams and challenges of a young boy living with a FASD 

(Director Melanie Hogan) is the story of a 12-year old boy born with one of the Fetal Alcohol Spectrun Disorders. Collaboration with Marnunwarntikura Women's Resource Centre and Nindilingarri Cultural Health Services. This DVD was launched at the United Nations in May 2012

 

Order DVD through Marninwarntikura Fitzroy Women's Resource Centre
Phone:08 9191 5284/Fax:08 9191 5611/Email 

 

Story about launch of Tristan DVD at United Nations

 

The Marulu Strategy - Making FASD History in the Fitzroy Valley

This is the story of how and why the Marulu strategy was implemented by the women in the community

 

For further information on the films/DVDs contact Associate Professor Jane Latimer 

 

 

Development of the first screening and diagnostic service for FASD in NSW

The Children's Hospital at Westmead

This project will establish the first diagnostic clinic for FASD in Australia, and is a collaboration of health professionals, researchers, community organisations and government. A key component of the project involves testing and refining a new diagnostic tool, and building consensus on nationally agreed clinical guidelines. The project will inform evidence-based practice and provide training and education to more health professionals in the use of screening and diagnostic tools. The research team will collate prevalence data on FASD and also survey the impact of FASD on families, parents and carers, to enable the provision of more relevant and improved services. As part of the project evaluation, the research team will estimate the costs of setting up and running a FASD assessment service to inform the development of screening and diagnostic services elsewhere in Australia.

 

For more information contact Professor Elizabeth Elliott  or Dr Elizabeth Peadon 

 

 

National Indigenous Foetal Alcohol Spectrum Disorders (FASD) Resource Project

National Drug and Alcohol Research Centre

This project aims 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 and pregnancy and FASD.

Read more about this project

 

 

Improving services for pregnant women dependent on alcohol

National Drug and Alcohol Research Centre (NSW)

This project aims to improve treatment practices of chronic alcohol dependence in pregnancy. At present, only a small proportion of pregnant women who drink at high levels are identified and treated. There are a number of reasons for this, and to date barriers to treatment have been identified as including a fear of losing custody of their children, a lack of childcare if they were to go into treatment, a lack of access or priority for pregnant women and a lack of special services.

 

This study will examine the experiences of alcohol treatment in pregnancy and barriers in accessing services from the perspective of alcohol dependent women and the clinicians that treat them.  In particular, this study will examine the role of gender stereotypes in the development of alcohol use problems in contemporary Australian society.

 

Read the Final Report

For further information contact Dr Lucy Burns or Dr Courtney Breen  

 

 

Improving services to families affected by FASD

National Drug and Alcohol Research Centre (NSW)

Read the Final Report 

 

 

The 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

The University of Queensland Centre for Clinical Research

The aim of the project is 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.

 

Read the Final Report

 

For further information contact Professor Heather Douglas on 07 3365 6605 or Dr Jan Hammill on 07 3162 3533 

 

 

No Safe Amount - The Effects of Alcohol in Pregnancy

NPY Women's Council - Alice Springs, Northern Territory

"No safe amount - The Effects of Alcohol in Pregnancy" is an early intervention and prevention campaign designed to raise awareness of the deleterious and permanent effects on the unborn child of using alcohol during pregnancy, particularly awareness of Foetal Alcohol Spectrum Disorders (FASD), through an educational/advertising campaign and DVD resource using a combination of media including animation and live action. The campaign was developed in partnership with young people in the remote Aboriginal Community of  manpa, including script development, pre- and post-production and casting.  The stories contained within the DVD were role played by local community members who were actively engaged in the process. And the three 30-second broadcast-quality commercials are in both Pitjantjatjara (the local language) and English.  

 

The three components of the campaign are: Ititjara(pregnancy); The Growing Brain; and Responsible Fathers.  In 2010 the TV commercials were aired for three months on Imparja Television, which has the largest broadcasting footprint in Australia, ensuring the message was spread far and wide. The commercials have been recognised with a 'highly commended' at the 2011 National Drug and Alcohol Awards and the project won the 2011 Deadly Award for Outstanding Achievement in Aboriginal and Torres Strait Islander Health.

 

 

Education advertisement for Foetal Alcohol Spectrum Disorder (FASD)  

The South West Women's Health and Information Centre (SWWHIC), Bunbury WA

SWWHIC is a centre for women to have one on one appointments with a councillor, Registered Nurse or Life Coach.  We run Pap Smear Clinics, Sexually Transmitted Infection Screening Service as well as many other health programs and talks.

 

In 2009 the SWWHIC received a grant from AERF.  The grant was to produce an education advertisement in regard to Foetal Alcohol Spectrum Disorder (FASD), to educate the public about the risk of drinking alcohol during pregnancy and breastfeeding.  A focus group met twice deciding on a positive message to support the pregnant and breastfeeding mother, with the message to empower all women and the whole community to make the healthiest and safest choice. The message: "If you're pregnant or breastfeeding or breastfeeding, there is not known  "safe level" of alcohol consumption." The advertisement features local talent, from many different cultures. It was filmed locally, with the scene's being chosen that don't identify Bunbury, they could be from anywhere in Australia. One of the talents is a local Noongar Elder, with her daughter and many other family members who support this message.

The advertisement has been aired on GWN throughout Western Australia, in February 2011. SWWHIC have received and continue to receive great positive qualitative feedback in regard to the simple and positive message.

This project was funded by the Alcohol Education and Rehabilitation Foundation.

The full 30 second and short 15 second advertisements can be viewed at http://www.youtube.com/user/SWWHIC 

 

For further information contact Nerida McMillan, Nurse Educator.

 

 

Strong Spirit Strong Future

The Strong Spirit Strong Future- Promoting Healthy Women and Pregnancies project commenced in July 2010 and is funded under the Council of Australian Governments' Closing the Gap funding until 30 June 2014. The project, designed for Aboriginal people and communities, aims 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 includes the following strategies:

  • development of culturally secure resources
  • community awareness media campaign
  • training and education for health professionals and other workers.

 Read more about this project at Strong Spirit Strong Futures

 

 

FASD Training Program for Service Providers

The National Organisation for Fetal Alcohol Spectrum Disorders Australia (NOFASD Australia) is developing a training program for the child and family services sector aimed at building capacity to support those who care for children living with FASD. The pilot to be conducted in Tasmania is funded by the Foundation for Alcohol Research and Education.

 

For further information contact Vicki Russell 

 

 

WA FASD Model of Care

The WA Health FASD Model of Care was developed by a Working Group convened by the WA Child and Youth Health Network. Read the 2010 FASD Model of Care. Further information on the implementation process can be found on the Health Networks website FASD Model of Care.

 

 

Anyinginyi Health Aboriginal Corporation - Fetal Alcohol Spectrum Disorder Project

This project commenced in September 2011 and is mandated to raise awareness, educate, prevent and support. The initial focus is twofold:

To identify and partner/network with existing services and programs

to develop a library of resources which can continue to be used by the community beyond the lifetime of the project

Read more

 

Watch the film Barkley Fights FASD

This community-written and performed short film, uses puppet characters to deliver strong messages about Foetal Alcohol Spectrum Disorder and drinking during pregnancy

 

 

Ord Valley Aboriginal Health Service - Social Support Unit - FASD Prevention Program

Over the past 3 years the FASD team have become leaders, in Kununurra and surrounding areas, in health promotion activities and education.  They have sustained an all of community approach, to education about FASD, using innovative and imaginative ways to increase community knowledge. The program was originally funded through MG OES but is now COAG funded.

Read more

 

FASD Peer Education Project

The Injury Control Council of Western Australia (ICCWA) in collaboration with the Telethon Kids Institute and the WA Drug and Alcohol Office will develop an innovative FASD peer educaiton framework and a suit of resources for peer educators. The purpose of the project is to train peer educators who can inform and educate community members in a personal, respectful and approachable way of the harms of alcohol conumption during pregnancy and whilst breastfeeding.

This project is funded by the Foundation for Alcohol Research and Education (FARE).

For further information please contact Mary O'Kane