Aim: Fetal alcohol spectrum disorders (FASD) constitute a range of conditions that can occur following prenatal alcohol exposure (PAE). The estimated prevalence of FASD in Ireland is 4.75%, the third highest in the world. Ireland does not have published clinical guidelines on the diagnosis and management of FASD. This study aims to explore the needs and challenges experienced by caregivers of children and young people with FASD in Ireland.

Subject and methods: An anonymous online survey was used to collect caregivers’ experiences of caring for someone with FASD. The qualitative survey data (n = 58) were analysed with NVivo using thematic analysis.

Results: Four themes were generated: (1) awareness and understanding of FASD, (2) complexity of needs, (3) impacts on family, and (4) access to services. The caregivers described lack of awareness and understanding of FASD within the healthcare services and school system. Complexity of the children’s needs, manifested as various emotional and behavioural issues and somatic symptoms, and insufficient support had impacted the whole family. Lack of support from family members and support services increased the experienced burden of care. Foster and adoption agencies were the main sources of support for some caregivers.

Conclusion: The experienced burden of care by the caregivers mirrored the overall lack of awareness and understanding on FASD, and the insufficient support received within the healthcare services and school system. The findings contribute to raising awareness, informing policymakers, and promoting equitable access to healthcare services for families living with FASD in Ireland.