First research of it's kind carried out in Ireland - Understand the Experiences and Need of Family Caregivers of People living with FASD

This new research shines a light on the lives, challenges and support needs of families raising children and young people with Foetal Alcohol Spectrum Disorders here in Ireland. The "FASDcare" study is the first of its kind in Ireland and included a survey of 70 caregivers. 

Dr Katy Tobin, Assistant Professor in Biostatistics at the Global Brain Health Institute and Public Health and Primary Care, School of Medicine, Trinity College Dublin was the lead investigator on the research. The report highlights the enormous stress and financial strain faced by caregivers of children and young people living with FASD in Ireland as they navigate a system that does not provide diagnosis or specialist services for this complex range of disorders. FASD affects about 5% of young people in Ireland, the third highest rate in the world. Our findings illustrate the urgency for change to address the major inequities and unmet need faced by thousands of families affected by FASD in Ireland.

Foetal Alcohol Spectrum Disorders (FASD) are a range of adverse health effects attributable to alcohol consumption during pregnancy. A major gap exists in the availability of support services to meet the complex needs of people living with FASD in Ireland, including educational, social and medical services. FASD are associated with a wide range of complex co-morbidities. The most common co-morbidities reported in this new study were emotional or behavioural disorders including Attention Deficit Hyperactivity Disorder (ADHD) / Attention Deficit Disorder (ADD) (64%) and Autism Spectrum Disorder (ASD) (21%). The rate of ASD in this study far exceeds that reported in the literature, potentially indicating misdiagnosis of children here.

The launch of the report was held at Trinity College Dublin, with Dr Tobin presenting her summary of the research.

You can read the full report by downloading it below.