Identifying strategic research priorities of stakeholders for fetal alcohol spectrum disorder in Aotearoa.

Abstract

Fetal alcohol spectrum disorder (FASD) is under-researched in Aotearoa New Zealand (NZ). There is a pressing need to establish a research agenda that is aligned with Te Tiriti o Waitangi and relevant to both stakeholders and end-users, to improve the outcomes and support for people affected by FASD. We conducted hui and interviews to identify consensus on research priorities among key stakeholders for FASD in NZ, including whānau and caregivers, health care workers, educators, academics and clinicians. The hui focused on three main topics: prevention; assessment and diagnosis; and intervention. Hui transcripts were analysed to identify priorities. Once the research questions or priorities were identified we sent a follow-up survey to participants asking them to rate each research question on their importance and relevance. Four hui and ten interviews (n = 52) were conducted across the North Island between April and July 2021. We identified 20 research priorities from the hui and interviews. Based on participant feedback (n = 18), the most important and relevant priority was: 'What can we do to encourage success for people with FASD throughout their lives?'. The priorities identified through the workshops and hui will be valuable in guiding future research and policies relating to FASD.