Community Priority setting for Fetal Alcohol Spectrum Disorder Research in Australia

Abstract

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.

Identifying the asthma research priorities of people with asthma, their carers and other stakeholders

“…We present priority themes from among the data collected, analysed and workshopped, where each theme represents a program of research containing specific focused questions. Other similar exercises have chosen to report single specific questions 9,35 . Many themes and questions prioritized by end‐users also reflect priorities of current and recent past asthma researchers in Australia and internationally.…”

“…A cross‐sectional mixed‐method study was undertaken. Existing priority setting approaches 6,9 were adapted to use video conferencing and electronic data collection 10 . This enabled broad geographic representation and management of infection control issues.…”

“…Other similar exercises have chosen to report single specific questions. 9,35 Many themes and questions prioritized by end-users also reflect priorities of current and recent past asthma researchers in Australia and internationally. These include asthma remission, [17][18][19] COVID 19 and asthma, 20 asthma care and self-management 24,25 and asthma diagnosis 30 which provides reassurance that the agenda and priorities are valid.…”

‘We do what we can as soon as we can’ Alcohol and Other Drug workforce perspectives on preventing and responding to prenatal alcohol exposure

“…Whilst no one system can meet all demand (Roche & Nicholas, 2017), AOD use in pregnancy must continue to be on the agenda (Finlay-Jones et al, 2020). This study highlighted workers perceptions of significant unmet need in the community and inadequate support to 'fix' a never-ending issue.…”

Key Stakeholder Priorities for the Review and Update of the Australian Guide to Diagnosis of Fetal Alcohol Spectrum Disorder: A Qualitative Descriptive Study

“…However, understanding facilitators and barriers to current guideline use and identifying opportunities for improvement will strengthen revisions and maximise guideline uptake and impact in policy and practice. Although several Australian studies have examined community priorities with regard to FASD research [17] and health professionals' familiarity with and use of existing FASD diagnostic guidelines [18], no other study has examined priorities specific to FASD clinical practice guidelines in Australia that considers a broad range of stakeholder perspectives.…”