A systematic review of literature published worldwide (including government, other websites and reports) was undertaken. Information from other countries on screening and diagnostic tests, procedures and guidelines was considered for their suitability for use in Australia.
A formal consensus method (Delphi Process) was used to enable a wide range of knowledge and experience to be synthesised and brought together to meet the project aim to develop an instrument that can be used to improve the identification and/or diagnosis of FASD in Australia.
Participants in the Delphi process included:
- Medical practitioners - paediatricians, neonatologists, general practitioners, geneticists, obstetricians, psychiatrists
- Nurses - clinical, midwives, maternal and child health, practitioners
- Clinical Psychologists
- Occupational Therapists
- Speech Pathologists
- Aboriginal HealthWorkers
- Social Workers
The Delphi process was administered as an on-line questionnaire over two rounds. It was designed so that participants could easily complete the questionnaire in a number of sessions. Participants were recruited via invitations to peak medical colleges and societies, recommendations by members of the Steering Group and through the website and newsletter. 139 health professionals participated in the Delphi process.
Community and Consumer Workshops
To ensure that consumers and the community could be actively engaged in this project outside the formal Delphi process, we used small discussion groups and a 'world café' process to explore questions about alcohol and pregnancy. This process was called a 'Community Conversation'. Community Conversations were held in Perth (December 2010) and Cairns (February 2011). 32 women particpated the community conversations.
The purpose of the alcohol and pregnancy community conversation was to provide input to the Steering Group for use when developing the screening and diagnostic instrument. The community voice aimed to gather information from consumers and the community who are not as well informed about FASD in a manner that was non-judgemental. It was particularly important when the Steering Group was considering questions that maybe asked of women as part of the screening tool. The Community Conversation was an important foundation for meaningful and inclusive consumer and community participation.
Read a summary of the Community Conversations
Consensus Development Workshop
The second stage of the formal consensus process used a consensus development workshop to review the outcomes of the literature review, the Delphi process and community conversations. The FASD Collaboration applied these findings to the development of the final diagnostic instrument.
Read more about the workshop outcomes
Clinician and Consumer Subgroups
Following the workshop a subgroup of paediatricians and medical practitioners reviewed the workshop outcomes related to diagnosis and constructed the final instrument. A three-member consumer subgroup was formed to review the workshop outcomes related to consumer resources and develop the final consumer resources for inclusion in the diagnostic instrument.