The purpose of the Alcohol and Pregnancy community conversations was to provide input to the Australian Fetal Alcohol Spectrum Disorders Collaboration for use when developing the screening and diagnostic instrument. The process of enabling the community ‘voice’ in the project aimed to gain information from consumers and community members who are not as well informed about Fetal Alcohol Spectrum Disorders as the consumer members of the Collaboration.
The community conversations were about creating an environment where women felt safe to have honest conversations about Fetal Alcohol Spectrum Disorders. It was particularly important when the Collaboration was considering questions that may be asked of women as part of the screening tool. The community conversations were an important foundation for meaningful and inclusive consumer and community involvement in the project. One community forum was held in Perth and the other was held in Cairns to provide consumers and community members in both locations an opportunity to attend and have a say.
Who attended the community conversations?
- Women from the community of childbearing age
- Community members associated with earlier research projects
- Members of Health Consumers Council WA
- Community members associated with the Involvement Program
- Health workers involved in community programs
- Aboriginal community workers
- Women who provide support for children and families with Fetal Alcohol Spectrum Disorders
How was it done?
The community conversations were advertised to:
- A broad range of consumer and community organisations
- Reference groups
- Women living in Perth and Cairns
On the day, consumers and community members discussed their experiences of communicating with health professionals about alcohol and pregnancy. The ‘world café ‘process was used which means people sat around a number of tables to discuss specific questions. You can find out more about the world café process at this link.
The community conversations were facilitated by the Consumer Advocate. The project manager presented about the research and members of the National Organisation for Fetal Alcohol Spectrum Disorders Australia gave a presentation on living with children with Fetal Alcohol Spectrum Disorders.
Did the community conversations make a difference?
The following recommendations from the community conversations underpinned the development of the Fetal Alcohol Spectrum Disorder Diagnostic Instrument.
- Standard set of questions (diet, smoking, drugs, lifestyle etc) that are asked by health professionals (GP, obstetrician, midwife, maternal/child health nurse) of all women. No individuals or groups to be singled out
- Questions should be asked in private – not in front of partners or family
- Language should be culturally sensitive and questions should be easy to understand by all women – don’t use medical terminology
- Informed consent – parents/guardians/kinship carers should be asked if they want to proceed with screening for Fetal Alcohol Spectrum Disorder
- Instrument needs to provide a guide and referral pathways
- Appropriate for all Australian children (urban, rural and remote) and for different ages
Consumer and community representative members of the Collaboration developed a number of documents including:
- Consent forms
- Information on Fetal Alcohol Spectrum Disorder diagnostic assessment for parents and carers
- Information for clinicians on issues that patients and their parents or carers may experience during the Fetal Alcohol Spectrum Disorder diagnostic assessment
The Collaboration thought that consumer and community participation was important, essential, worked well and was integral to the success of the project.
Comments from consumers
“It was very informative”
“Our voices and points of view were heard”