Journal article
Community priority setting for fetal alcohol spectrum disorder research in Australia
International Journal of Population Data Science, Vol.5(3), pp.1-14
2020
Abstract
Introduction
Fetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental disorder caused by prenatal alcohol
exposure (PAE). FASD research is a rapidly growing field that crosses multiple disciplines. To ensure
research is relevant and meaningful for people living with FASD, their families, and the broader public
there is a need to engage community members in setting priorities for research.
Objectives
Our 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 FASD
and alcohol use in pregnancy in Australia. Our secondary objective was to provide an overview of
current research in the highest priority areas identified.
Methods
The approach for this study involved two community surveys and a consensus workshop, followed by
a rapid literature review. Survey responses (n = 146) were collected and grouped using qualitative
thematic analysis. The themes identified were then ranked in a second survey (n = 45). The 22
highest ranked themes were considered in a workshop with 21 community members, and consensus
on the top ten priority areas was sought. The priority areas were grouped into conceptually similar
topics and rapid literature reviews were undertaken on each.
Results
A diverse range of priorities was identified within key areas of prevention, diagnosis, and therapy. On
request from participants, separate priority lists were developed by Aboriginal and non-Aboriginal
participants.
Conclusions
There is need for a national network of researchers to take forward the research commenced by the
Centre of Research Excellence, FASD Research Australia, in addressing community priorities
Details
- Title
- Community priority setting for fetal alcohol spectrum disorder research in Australia
- Authors/Creators
- A. Finlay-Jones (Author/Creator)E.J. Elliott (Author/Creator) - The University of SydneyD. Mayers (Author/Creator) - Community MemberH. Gailes (Author/Creator) - Community MemberP. Sargent (Author/Creator) - Community MemberN. Reynolds (Author/Creator) - Community MemberB. Birda (Author/Creator) - Community MemberL. Cannon (Author/Creator) - The Kids Research Institute AustraliaT. Reibel (Author/Creator) - Murdoch UniversityA. McKenzie (Author/Creator) - The Kids Research Institute AustraliaH. Jones (Author/Creator) - The Kids Research Institute AustraliaN. Mullan (Author/Creator) - The Kids Research Institute AustraliaT.W. Tsang (Author/Creator) - The University of SydneyM. Symons (Author/Creator) - The Kids Research Institute AustraliaC. Bower (Author/Creator) - The Kids Research Institute Australia
- Publication Details
- International Journal of Population Data Science, Vol.5(3), pp.1-14
- Publisher
- Swansea University. Prifysgol Abertawe
- Identifiers
- 991005540130007891
- Copyright
- © 2020 The Authors.
- Murdoch Affiliation
- Ngangk Yira Aboriginal Health Research Centre
- Language
- English
- Resource Type
- Journal article
UN Sustainable Development Goals (SDGs)
This output has contributed to the advancement of the following goals:
Metrics
93 File views/ downloads
82 Record Views