FASDcare: Understanding the experiences and needs of family caregivers of people with Fetal Alcohol Spectrum Disorder (FASD) in Ireland

Abstract

This report shines a light on the lives of families in Ireland raising a child/children with Fetal Alcohol Spectrum Disorders. Its’ subject matter relates to what is most likely one of the most stigmatized of all health issues and one that we are only slowly beginning to acknowledge and understand here in Ireland. Pre-natal alcohol exposure is the leading cause of preventable intellectual disability in the world. Despite the fact that alcohol has been documented as a toxic teratogenic substance for over 40 years, it is only recently that FASD has received any meaningful consideration by researchers, policy makers and service providers here. This report makes an important contribution to our understanding of the issues, challenges and unmet support needs of families raising a child with FASD. While the prevalence of FASD in Ireland is not known, a 2017 systematic review and meta-analysis estimated prevalence of alcohol use during pregnancy showing Ireland to have one of the highest prevalence of all countries studied. It estimated that between 2.8 – 7.4% of the population of Ireland might have FASD. Earlier this year, the Irish Government committed to introducing health warning labels on alcoholic drinks from 2026, a move that will make Ireland the first country in the European Union to do so. Labels will warn consumers of the dangers of drinking alcohol while pregnant or planning a pregnancy. The announcement on labelling sparked a backlash across the EU, with nine member countries filing objections and the alcohol industry branding the move as an attack on the single market and on ‘moderate’ drinking. There is little doubt that raising awareness at a population level about the risks associated with consuming alcohol when pregnant is of crucial importance. However, we also need to see, hear and respond to the needs of children and adults with FASD, and their families. This report gives those families a voice. We urge policy makers, politicians and all who are committed to protecting and promoting the rights and wellbeing of children in Ireland to listen and to respond. Huge thanks are due to Dr Katy Tobin and the research team in Trinity for their work on this report. Thanks also to the Irish Research Council who funded the study and in doing so have shone a light on FASD in Ireland. Above all, thanks are due to each and every participant who took time out to participate in this research and share their experiences. This report would not exist without you.