Indigenous leaders in the Fitzroy Valley of WA were worried that alcohol use in pregnancy might damage the unborn child. In 2009 they partnered with us other researchers to conduct the Lililwan (all the little ones) Project. Through interviews with caregivers and assessments with children, we found that 55% of children were exposed to alcohol in utero, usually at high-risk levels, and 19% met the criteria for fetal alcohol spectrum disorder (FASD), which is the highest rate in the world. We also found that early life trauma was almost universal. An individualised Management Plan was provided for all children. However, we had concerns regarding the capacity of the health and education services to deal with the large numbers with chronic, complex needs.
Leaders are aware that some youth from the Lililwan cohort are doing well in adolescence despite difficulties in early childhood. However, others are struggling in adolescence with poor health and educational attainment, and high rates of self-harm, suicidal ideation and contact with juvenile justice.
Leaders want to identify protective and risk factors for adversity in adolescence. Community members sought to partner with researchers from the University of Sydney to follow-up the Lililwan cohort at age 17-19 years, ten years after the Lililwan Project.
We will conduct psychological assessments and interviews with youth from the Lililwan cohort and interviews with their parent/carer and teachers. We will also collect linked health, education, justice, and child protection data.
The community noted that research must provide direct and immediate benefits to participants. Access to disability services was identified as a priority need not only for participants with FASD from the Lililwan Project but across the wider community. The National Disability Insurance Scheme (NDIS) is currently being rolled out in the Kimberley, and many local Aboriginal Organisations are being asked to navigate the disability system for the first time. To help ensure the NDIS rollout is successful in the Fitzroy Valley, we will pilot the NDIS application process by supporting all of the participants in the Lililwan Project with a disability to access the NDIS. We will also use this opportunity to identify underlying adaptive and executive functions associated with positive and adverse adolescent outcomes.
The community were also interested in learning how to identify and diagnose adolescents and adults with FASD. We will host training in how to use the FASD guidelines to diagnose adolescents and adults. There is some evidence that the three FASD facial features may be less noticeable with age, suggesting that the criteria used to identify the facial features in children might need to be adjusted for adolescents and adults. We will test this hypothesis by comparing photos of adolescents in the Bigiswun Kid Project with their photos from the Lililwan Project.
Finally, through our consultation, we identified a significant gap in youth mental health services and a general lack of support for adolescents disengaged from school.
Community consultation: We have completed a comprehensive community consultation process and received support from the follwoing local services
- Fitzroy Valley community
- WA Country Health Paediatric, Allied Health and Child and Adolescent Mental Health teams
- WA Department of Education and Independent Schools WA
- Juvenile Justice
- Department of Communities and Families
- National Disability Insurance Agency (NDIS)
Interviews: These have been conducted with parents, adolescents and teachers
Ethics: We have received approval from the following Committees
- Kimberley Aboriginal Health Planning Forum Research Subcommittee
- Western Australian Aboriginal Health Ethics Committee
- Western Australian Country Health Services Human Ethics Committee
- Western Australian Department of Health Human Ethics Committee
Our Project Team
University of Sydney
- Professor Elizabeth Elliott
- Dr Lauren Rice
- Dr Tracey Tsang
- Professor Natasha Nassar
Telethon Kids Institute
- Professor Carol Bower
- Ms Lisa Canon
Marninwarntikura Women's Resource Centre
- Ms Emily Carter
- Ms Marmingee Hand
- Ms Jadnah Davies
- Ms Sue Thomas
- Mr Eric Bedford
- Ms Laurena Shaw
- Ms Chyenne Carter
Project Partners: University of Sydney, Telethon Kids INstitute, Marninwarntikura Women's Resource Centre
Project Funders: FASD Research Australia Centre of Research Excellence (2018-2020), Australian Rotary Health (2018-2020), Ian Potter Foundation (2020-2023), University of Sydney (2020-2023)