Fetal alcohol spectrum disorder is common, yet there is little support for carers, something a researcher at Waipapa Taumata Rau, University of Auckland hopes to improve.
Fetal alcohol spectrum disorder (FASD) is common in Aotearoa New Zealand, yet there is little support for individuals and whānau affected by it – something Waipapa Taumata Rau, University of Auckland is keen to change.
Dr Joanna Ting Wai Chu, a senior research fellow in social and community health, has received $1.4 million over three years to run a gold‑standard trial of a parenting intervention aimed at supporting caregivers and people with FASD.
“I am thrilled to receive the HRC Health Delivery funding for this trial because I feel a sense of social responsibility to carers who have been advocating for better support for many years now.”
The Ministry of Health estimates that three to five percent of the population may have been exposed to alcohol before birth, meaning it is likely that 1,800 to 3,000 babies are born each year with FASD.
For Chu, finding out more about the scale of the problem and what can help feels like a social responsibility. “We have such a huge alcohol‑drinking culture in New Zealand, but when you come into the space of foetal alcohol spectrum disorder, the amount of blame and the stigma attached is actually quite upsetting.”
According to data from the University of Auckland’s Growing Up in New Zealand study, around half of pregnancies are unplanned, Chu says.
“If you look at our drinking culture, and the fact we often don’t find out we’re pregnant until we’re six or seven weeks or, even 12 weeks for some, by then you probably have drunk some alcohol.”
Yet, even though it is easy to accidentally drink during pregnancy, there is still shame and stigma associated with FASD, Chu says.
FASD is a lifelong disability that affects brain function and development, creating significant challenges for individuals, their families and society.
International research estimates that ten to 36 percent of people in youth-justice facilities have FASD.
Chu plans to co‑design a randomised controlled trial of a parenting intervention currently available only on an ad hoc basis, usually when a community organisation can fund it.
Chu developed the funding application with the FASD Care Action Network (FASD‑CAN), a nonprofit that supports caregivers impacted by FASD. They will now work together to design the trial to ensure it is bicultural, measures the most important outcomes and is delivered safely and respectfully.
“We want to make sure that the programme is going to work for the community, rather than us as researchers deciding everything. One of the issues with parenting programmes is they often works in the controlled setting, but when you roll them out into the community, the impact or the uptake is often not very high.
“And that’s because often what we can control for in research doesn’t necessarily mean it applies in the community.”
The aim is to ensure the programme meets community needs and, in the long run, for it to be funded by government as a key parenting programme to support carers.
“There is currently very little support available for parents and carers,” Chu says.
The hope is that parents and carers will learn about FASD, how it differs from other spectrum disorders and strategies to respond appropriately.
With better diagnosis and targeted support, Chu hopes carers will feel better equipped to support those living with this common disabling condition.
