Researchers: Prof Elizabeth Elliott, A/Prof Jane Latimer, Dr James Fitzpatrick, Ms Barbara Lucas (The George Institute for Global Health); Ms Maureen Carter (Nindilingarri Cultural Health Services); Ms June Oscar Marninwarntikura Women’s Resource Centre); Prof Carol Bower (Telethon Institute for Child Health Research), Prof John Boulton, Ms Robyn Doney (WA Country Health Services)
Funding: The Australian Government Departments of Health and Ageing and Families and Housing, Community Services and Indigenous Affairs.
Project summary: Indigenous leaders in the Fitzroy Valley (Kimberley, WA) initiated a partnership between Nindilingarri Cultural Health Services (Fitzroy Crossing), the George Institute for Global Health and the University of Sydney Medical School to conduct a FASD prevalence study (the Lililwan Project), including experts in local Aboriginal culture, Indigenous health, paediatrics, epidemiology and Human Rights. The prevalence study is part of a broader community strategy to overcome FASD and Early Life Trauma in the Fitzroy Valley. There is strong community support for leadership and collaboration in the Project. Stage 1 of the Project (data collection completed in August 2010) involved collection of demographic, prenatal, neonatal and early childhood data from 127 parents/carers of children born in 2002 or 2003 using a questionnaire (diagnostic checklist developed in consultation with the local community), as well as delivery of a community and service provider education program. There was a 95% participation rate within the target cohort of 134 children. This final stage of the prroject relates to the Interdisciplinary FASD Diagnostic Assessments in ~130 children born in 2002 or 2003 residing in the Fitzroy Valley. The interdisciplinary medical and neurodevelopmental assessment will be comprehensive, evidence-based, and tailored to the remote clinical context. It has been developed in consultation with Nindilingarri Cultural Health Services and the local health and education workforce and was trialled in 6 children at Fitzroy Crossing in November 2010. The clinical team consists of Aboriginal health workers, a paediatrician, school health nurse, physiotherapist, occupational therapist, speech pathologist, and psychologist. Aboriginal health workers have been employed and trained in research methods specific to this study (local community navigators) and they facilitate all interactions between the research team and participants.
Progress: Ongoing