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Alcohol and Pregnancy & FASD

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        Community priority setting partnerships

        Fetal Alcohol Spectrum Disorder (FASD) Community Priority Setting Partnership for Research

         

        What was this research about?

        The aim of this project was to help focus future research funding on the questions that matter to people who are interested in alcohol consumption during pregnancy, people with lived experience of FASD and service providers.  

        The process used in the project was based on the James Lind Alliance in the UK, an organisation established and funded by the National Institute of Health Research to provide an infrastructure and process to help people agree on the most important research, questions, or uncertainties, in their area of interest.

        The Project Team was established in March 2017 and consisted of representatives from:

        • FASD Research Australia Centre for Research Excellence 
        • FASD Research Australia Consumer Reference Group
        • Crowe Associates (UK)
        • Western Australian Consumer and Community Health Research Network 
        • Community members from around Australia who have lived experienced of FASD or an interest or concern about alcohol consumption during pregnancy

        The priorities were determined by:

        • conducting an online survey for the community to identify themes and topics of interest for future research considered important by community members who are/have been affected by FASD and service providers, specifically around two streams: a) Prevention of FASD and b) Diagnosis and treatment of FASD.
        • conducting a follow-up online survey for the community to rank the order of importance of the themes and topics identified from the survey results
        • holding a one-day consensus workshop for the Community Reference Group and other community representitves

         

        Priorities identified following this process

        Top ten priorities

        1. Changing society views and beliefs about alcohol use during pregnancy
        2. Doctors’ and/or other health professionals’ knowledge about alcohol in pregnancy
        3. National public health campaign/education
        4. Education about the risks of drinking alcohol during pregnancy in high school
        5. More training in the diagnosis of FASD is required
        6. Is the workforce appropriately trained to support people with FASD?
        7. Understanding why women drink
        8. What is the best/most effective support for those with FASD?
        9. Non-judgemental pregnancy support
        10. What support is there for parents and families living with FASD?


        Top ten priorities - Aboriginal community members

        1. National public health campaign/education
        2. Education about the risks of drinking alcohol during pregnancy in high school
        3. Mums staying healthy during pregnancy
        4. Role of immediate, extended family and/or community and being good role models to support women
        5. Non-judgemental pregnancy support
        6. Intergenerational trauma
        7. Understanding why women drink
        8. Changing society views and beliefs about alcohol use during pregnancy
        9. Doctors’ and/or other health professionals’ knowledge about alcohol
        10. What is the best/most effective support for those with FASD?

         You can read about the priority setting process in the final report

        The next stage in the process is to seek answers and actions for these top ten priorities and use the results to shape policy and practice. FASD Research Australia  will review their research strategy and continue to advocate for a national strategic approach to FASD research that includes the views and perspectives of the community.

        Who did this research?

        Investigators

        • Professor Carol Bower - Telethon Kids Institute, The University of Western Australia, Perth, Australia
        • Professor Elizabeth Elliot – University of Sydney, Sydney, Australia
        • Dr Amy Finlay-Jones - Telethon Kids Institute, The University of Western Australia, Perth, Australia
        • Ms Narelle Mullan – Telethon Kids Institute, The University of Western Australia, Perth, Australia
        • Mr Neil Reynolds – Community Representative, Perth, Australia
        • Ms Helen Donnelly – Community Representative, Perth, Australia
        • Ms Paula Sargent – Community Representative, Canberra, Australia
        • Ms Bridgette Birda ¬– Community Representative, Rockhampton, Australia
        • Ms Diana Mayers – Community Representative, Elliott, Australia
        • Ms Anne McKenzie - Consumer and Community Health Research Network and WA Health Translation Network, Perth, Australia
        • Ms Rebecca Nguyen - Consumer and Community Health Research Network and WA Health Translation Network, Perth, Australia


        Project team

        • Professor Carol Bower – Project Co-Lead
        • Ms Anne McKenzie – Project Co-Lead
        • Ms Narelle Mullan -  Project Coordinator
        • Ms Rebecca Nguyen – Project Officer
        • Ms Heather Jones – Researcher Officer

         

        Contact

        For information about this project contact

        Narelle Mullan

        08 9489 7619

        Email Narelle