The Marurra-U Partnership Study: Evaluation of wrap-around services for children with FASD in the Fitzroy Valley, WA

Summary

Reigniting community resilience using a strengths-based, solution-focused approach to support children and families with FASD.   This project will involve implementing and evaluating a model of wrap-around care developed in the Fitzroy Valley that incorporates trauma-informed, culturally appropriate care delivered in person in communities as well as using telehealth. This model of care is built upon a strong global evidence-base about wrap-around service models for children with complex mental and behavioural conditions as well as our team’s evidence and experience built over the past decade together including in the Lililwan (APP1024474) and PPP (APP1068620) projects.

Supervisor(s)

Professor Alexandra Martiniuk, Professor Elizabeth Elliott

Research Location

City - The George Institute for Global Health

Program Type

Masters/PHD

Synopsis

This project is led by an established collaboration between Marninwarntikura Women's Resource Centre (Marninwarntikura), Royal Far West (RFW) and the University of Sydney - called the Marurra-U Partnership. This collaboration extends the work of the Marulu Unit in Fitzroy Crossing which focuses on diagnosis and support of children with FASD and their families and communities. 
Our research shows that one in five children in the Fitzroy Valley have fetal alcohol spectrum disorder (FASD)1,2.Children with FASD have increased risk of adverse adult outcomes including contact with justice and incarceration. In the Banksia Hill study in WA, 36% of detained youth had FASD and the majority of these youth were Indigenous3. Early diagnosis and treatment improves life outcomes. Although our Lililwan prevalence study showed 20% of children in the Fitzroy Valley have FASD and are challenged by complex and chronic disability; current services are un-coordinated and unsustained lacking paediatric and multi-disciplinary expertise, and diagnosis and treatment is delayed. There is no comprehensive service model for children with FASD in Australia. There are also knowledge gaps regarding service models for remote Aboriginal communities struggling with FASD regarding acceptability, what works for who under what circumstances, outcomes from such services as well as cost effectiveness.  
This project meets priority needs named in the FASD National Plan, has been requested by the community, emerges from a set of strong and long-standing partnerships and RFW's extensive expertise in delivering allied health services to rural and Aboriginal children, families and schools, in-person and over telehealth. Our team includes policy makers, program managers from local community organisations, service providers and researchers. 
The research focuses on: implementing effective models of health care service delivery that build linkages with multiple sectors including early childhood and education; assessing the comparative value of various health interventions and return on investment; identifying what types of interventions are most appropriate to scale up and why - including how this can best be achieved. 
The research questions to be answered are:
1. How is the evidence-based wrap-around service delivered for children with FASD?
2. What is the impact of the wrap-around service on health and well-being?
3. Is the wrap-around service cost-effective for children with FASD?

Additional Information

Planning for this 5 year project is occurring now. It officially begins in 2021.This study is a mixed methods evaluation of wrap-around services for children with FASD in the Fitzroy Valley. A program logic model is being co-developed in keeping with Indigenous best practice recommendations. The theoretical approach to this implementation and evaluation project is the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) Framework. 
Research methods to be used include: descriptive observational data, qualitative, realist evaluation, pre/post study design, most significant change, cost-effectiveness.


The project location is a combination of the below options:

  • USYD Camperdown campus
  • George Institute city office
  • Royal Far West in Manly, NSW
  • Work from home
  • Travel if desired

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Keywords

Indigenous health, Paediatrics & Perinatology, health services research, implementation science, NHMRC Partnership fetal alcohol syndrome, remote communities, telemedicine, Neurological, mental health, child health, community health

Opportunity ID

The opportunity ID for this research opportunity is: 2881

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