Fetal Alcohol Spectrum Disorder (FASD) is a diagnostic term for severe neurodevelopmental impairments that result from brain damage caused by alcohol exposure before birth. As a major nationwide project to improve the policy architecture and clinical approaches around drinking during pregnancy draws to a close, Telethon Kids Institute researchers have worked with communities to come up with a tangible, practical legacy using the knowledge gained.
After five years, the FASD Research Australia Centre of Research Excellence – funded by the National Health and Medical Research Council and based at Telethon Kids Institute and the University of Sydney – has come to an end.
A series of comprehensive research projects carried out across Australia under the CRE has developed a detailed list of policy and clinical practice changes aimed at improving the diagnosis, treatment and prevention of FASD.
But policy change takes time, and for people living in communities where FASD is occurring, the issue is time critical.
In partnership with Aboriginal Elders in Port Hedland, Newman and Roebourne in WA, Telethon Kids Institute researchers – informed by knowledge accumulated over the lifetime of the CRE – have co-designed a series of outreach materials in traditional language, designed to spread the word in communities about the risks of drinking during pregnancy.
“FASD is an ongoing issue and the lesson learned from the research is that even though there are clear guidelines from the Health Department in regard to screening of young pregnant mums, there are reasons why this just doesn’t happen,” said Glenn Pearson, Director of Aboriginal Research at Telethon Kids Institute.
“So the complementary strategy to that is to build up the services knowledge around FASD, as well as arming communities with this material that they can continue to use as part of their overall primary health care plans.”
The series of posters, flip charts and videos delivered in-language are a powerful way to get the message across.
Local Elders feature in the materials, and they are speaking directly to their communities.
“This is essential if you want to connect with the community,” Mr Pearson said.
“Having those messages come from the Elders and people hearing their own language coming back to them makes a significant difference.
Glenn Pearson
“The Elders play such a vital role in the care arrangements for their children and their children’s children.”
Mr Pearson said it was a message not only directed at mothers.
“It’s not just about loading it all up on the shoulders of our women who are trying to do the best they can, it’s about saying to the men, you blokes, you’ve got to back your woman and if she wants to stop drinking then you’ve got to get off it too. Work as a team,” he said.
The resources, currently being finalised, will be rolled out through local Aboriginal health services.
Mr Pearson is hopeful they will have a meaningful impact.
“We still need to tell our families that the choices that we make for all the reasons that we do can have a lifelong effect on our bubs,” he said.
“If we want to keep our culture strong and keep our stories being told, we have to make sure we protect our bubs.”