Lay summary
Fetal alcohol spectrum disorder (FASD) is a lifelong disability that affects brain function and development, creating significant challenges for individuals, their families, and society. Despite the estimated $4.8 billion annual cost of FASD-related harm in Aotearoa New Zealand, there is a critical lack of support for caregivers and whānau. This project, in partnership with FASD-CAN (FASD–Care Action Network), will evaluate Life with FASD: Understand and Connect with Aroha, a tailored support programme designed to empower caregivers with knowledge, resilience, and practical strategies. Using a two-phase approach, we will 1) co-design the trial with caregivers and stakeholders to ensure cultural and community relevance; 2) conduct a randomised controlled trial to measure its effectiveness and implementation outcomes. The findings will provide robust evidence to inform policy and service delivery, addressing the urgent need for FASD-informed and evidence-based support for whānau and individuals living with FASD.