期刊名称：International Journal of Population Data Science
电子版ISSN：2399-4908
出版年度：2020
卷号：5
期号：3
页码：1-14
DOI：10.23889/ijpds.v5i3.1359
出版社：Swansea University
摘要：IntroductionFetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental disorder caused by prenatal alcoholexposure (PAE). FASD research is a rapidly growing field that crosses multiple disciplines. To ensureresearch is relevant and meaningful for people living with FASD, their families, and the broader publicthere is a need to engage community members in setting priorities for research. ObjectivesOur primary objective was to formally identify the views of people living with FASD, their par-ents/caregivers, service providers, and the general community on the research priorities for FASDand alcohol use in pregnancy in Australia. Our secondary objective was to provide an overview ofcurrent research in the highest priority areas identified. MethodsThe approach for this study involved two community surveys and a consensus workshop, followed bya rapid literature review. Survey responses (n = 146) were collected and grouped using qualitativethematic analysis. The themes identified were then ranked in a second survey (n = 45). The 22highest ranked themes were considered in a workshop with 21 community members, and consensuson the top ten priority areas was sought. The priority areas were grouped into conceptually similartopics and rapid literature reviews were undertaken on each. ResultsA diverse range of priorities was identified within key areas of prevention, diagnosis, and therapy. Onrequest from participants, separate priority lists were developed by Aboriginal and non-Aboriginalparticipants. ConclusionsThere is need for a national network of researchers to take forward the research commenced by theCentre of Research Excellence, FASD Research Australia, in addressing community priorities.
关键词：Public Involvement; Priority Setting; Fetal Alcohol Spectrum Disorder; Australia
