Chu Joanna T W, Dymus-Kurei Janell, McCormack Jessica C, McLachlan Andre D, Marsh Samantha, Wilson Holly, Newcombe David
National Institute for Health Innovation, School of Population Health, The University of Auckland, Auckland, New Zealand.
Hāpai te Hauora, Auckland, New Zealand.
J R Soc N Z. 2023 Aug 10;55(1):82-97. doi: 10.1080/03036758.2023.2241847. eCollection 2025.
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 ( = 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 ( = 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.
胎儿酒精谱系障碍（FASD）在新西兰的研究不足。迫切需要制定一项与《怀唐伊条约》一致且对利益相关者和最终用户都相关的研究议程，以改善受FASD影响人群的结果并为其提供支持。我们举办了座谈会并进行了访谈，以确定新西兰FASD关键利益相关者（包括家庭和照顾者、医护人员、教育工作者、学者和临床医生）在研究重点上的共识。座谈会聚焦于三个主要主题：预防；评估与诊断；以及干预。对座谈会记录进行分析以确定重点。一旦确定了研究问题或重点，我们就向参与者发送后续调查问卷，要求他们对每个研究问题的重要性和相关性进行评分。2021年4月至7月期间，在北岛各地举办了4场座谈会并进行了10次访谈（n = 52）。我们从座谈会和访谈中确定了20个研究重点。根据参与者的反馈（n = 18），最重要且相关的重点是：“我们能做些什么来鼓励FASD患者一生都取得成功？”。通过研讨会和座谈会确定的重点将对指导未来与FASD相关的研究和政策具有重要价值。
