A survey is being conducted to establish the experience of people living with or caring for someone with fetal alcohol spectrum disorder in Ireland. The move coincides with the introduction of minimum unit pricing for alcohol in recent days and against a backdrop of an estimated 600 babies a year being born here with FASD.
The research is the first of its kind in Ireland and is being conducted by Katy Tobin of Trinity College Dublin in collaboration with Alcohol Forum Ireland and ÉNDpae, a support group for parents and carers of people with the disorder in Ireland. The study is also being promoted by recently-established FASD Ireland, set up in September to support children, young adults and families with the condition.
Ms Tobin said the research has been funded by the Irish Research Council under a New Foundations grant.
She said: “It is aimed at families – primarily at the parent or caregiver, to give their experience of caring for someone with FASD.
We have very limited research in Ireland regarding FASD.” She said it is difficult for a proper diagnosis of FASD to be made in this country and there are no concrete figures available on its prevalence.
The most recent figures were published by the World Health Organization in 2017 and estimate that approximately 600 babies are born each year in Ireland with the syndrome. Ireland ranks third out of 187 countries for prevalence of FASD, behind South Africa and Croatia.
Ms Tobin said: “The survey asks about the diagnostic journey and it looks at the cost involved in getting a diagnosis as well as the costs of caring for someone with FASD.” It also looks at how someone with FASD is catered for in society, including in education, as well as the experience of carers and parents.
Ms Tobin said similar research has already been undertaken in England and Scotland. The survey got underway in November and will conclude later this month.
Founder of FASD Ireland, Tristan Casson-Rennie, said while the introduction of minimum unit pricing for alcohol was to be welcomed, is only one part of alcohol legislation that needs to be implemented.
He said: “The pricing is a part of what needs to happen. From an FASD point of view, the important action of the Public Health Alcohol Act 2018 was product labelling. That still has not happened.
"That has not happened and the latest estimate for that happening is 2024 which is very annoying given that we as a nation need to minimise the risks to babies being born. That public health campaign should be ongoing, irrespective of legislative proceedings.”
In 2020, the Australian and New Zealand Ministerial Forum on Food Regulation decided to introduce mandatory pregnancy warning labels on alcoholic beverages.
Mr Casson-Rennie added: “Every year that we lose, even on a conservative estimate, is 600 babies a year being born with FASD. As a society, we simply cannot afford the costs that come with supporting these children and young adults through life, caused by alcohol use during pregnancy or when trying to conceive a baby.” Parents and caregivers wishing to take part in the study can do so here.