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Community Involvement in FASD Research

Community Reference Group
A Community Reference Group has been established to sit alongside other advisory committees and oversee the strategic direction of FASD Research Australia.

Community and Consumer members will also participate in research conducted by the project teams. They will be supported by the Consumer and Community Involvement Program's resources and training at the Telethon Kids Institute.

 

Priority Setting Partnership Project

The aim of this project was to help focus future research 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 priorities were determined by:

  • Conducting an online community survey 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 community survey to rank the order of importance of the themes and topics identified from the survey results.
  • Holding a one-day consensus workshop with members of the Community Reference Group and other community members to develop ten community priorities.

Although a key objective of the project was to establish a list of top ten FASD research priorities, it was clear as the consensus workshop progressed that the Aboriginal community participants had significantly different context and concerns to consider. The Project Team decided that a list of priorities for the Aboriginal community needed to be captured separately to ensure their priorities were given the appropriate consideration.

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 in pregnancy
  10. What is the best/most effective support for those with FASD?

 

Find out more about the process and outcomes in the Final Report

Page last updated 22 May 2018