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Table 5 Summary of participant statements

From: Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia

Theme (number of statements) Summary of participant statements
Information to public (5) • Prevention is the priority and there should be a national campaign – TV, radio, posters, coasters, fridge magnets, social media and information in pubs, clubs, bars, behind toilet doors, Centrelink, Medicare, doctors and clinic waiting rooms, public transport
• Need for warning labels on alcoholic beverages
Information to women (10) • Use of visual aids to explain how alcohol actually affects the baby
• Messages from health professionals should be consistent and be honest that there is no known safe limit for drinking alcohol during pregnancy
• Awareness that even though FASDs are not curable, the correct diagnosis can help with strategies for the child and family
How to ask questions about alcohol use (15) • Make the question about alcohol use part of a standard set of questions that are asked in the context of diet and lifestyle for all pregnant women. Put an equal emphasis on alcohol as other substances such as tobacco or drugs
• Acknowledge that there is no single way of asking that will please everyone
• Questions should be simple, clear and easy to understand for all races/classes within society and not a lecture or interrogation. Should also recognise cultural sensitivities and that nodding the head does not always mean ‘yes’, I agree
• Explain how alcohol affects the baby and how it crosses the placenta – everything the mother drinks reaches the baby and the baby will be drunk with her
• Health professionals should be non-judgemental and prepared to deal with feelings of defensiveness, fear, guilt, shame, panic and the ‘what have I done’ questions. Need to focus on the future not on the past
Language (4) • Simplify the terminology, consider language barriers and the use of visual aids
Timing (7) • Information to women and community on alcohol use in pregnancy so women are better informed before they get pregnant
• Health professionals should talk about alcohol use before women become pregnant and at regular visits to GP by young women and women who may be contemplating becoming pregnant and build up a relationship that will continue into pregnancy
• Should be part of a routine set of questions asked by the midwife of all women at birth – should not be in an admission pack questionnaire
Feelings (16) • Defensive, confronted, concerned, ashamed, anxious and offended
• A feeling of guilt and shame, or doing something wrong and wanting to know why the health professional is asking the question about alcohol consumption
• Stereotyped by race/ethnicity
Counselling support (6) • Health professionals need to know where and how to refer women and/or family members to support and counselling services
• Women need support, not judgement or to be made to feel guilty. Health professionals should be mindful of mental health issues
Family community (5) • Information about alcohol use in pregnancy should be available to the whole community, not just women. Families (including men) need to help support other women/men who might be thinking about having a baby. This support is important. It is hard when communities/friends are all drinking and the pregnant woman isn’t accepted or doesn’t feel part of the group
• Questions about alcohol use should be asked in private and not in front of partners or family members
• This is about the child and their difficulties, not about their culture
Health professionals (9) • Important for health professionals to build relationships. Women prefer information coming from a child health nurse, midwife or female doctor as they take more time and seem more caring. Building trust between health professionals and women is important as there are shame factors associated with how much a woman has been drinking
• Research and women’s feedback is that health professionals are not providing information to women or they are giving mixed messages about alcohol use in pregnancy
• Health professionals should ask a woman what she knows about alcohol and pregnancy and ask if she would like to talk about this or would like to take some information away to read. Explain why these questions are being asked and that you are asking all pregnant women
Health professional training (6) • All health professionals need to be trained in communicating with women about alcohol and pregnancy in a manner that is non-judgemental, language that is easy to understand and that is culturally sensitive
• Training should commence at university with additional information as part of continuing professional development. Training should include information on what is a standard drink, risk factors, how to recognise FASD, diagnosis, and what difficulties a person with a FASD and their family will face in life
Resources (4) • Preference for visual aids to help explain how alcohol gets to the baby and how it can affect the baby
• Resources and information should be culturally appropriate and widely available in urban, regional and remote communities
Schools (4) • Information on alcohol use on pregnancy should be part of the drug and alcohol health education curriculum for 12 – 16 year olds and not as a stand-alone subject and should focus on the effects of drinking alcohol on the developing baby and the positives of how to have a healthy baby
General (14) • FASD is not curable – it’s for life
• Rename FASD as it just points the finger at the mother and labels the child. The name should represent the symptoms not the cause
  • Establish a register of children with a FASD
• Mandatory reporting of FASD. However, some women said pregnant women may be scared of mandatory reporting and fearful that they would be reported to the police and/or the Department for Child Protection
• Parents/guardians should be asked if they want to proceed with screening, i.e., provide informed consent
• A screening and diagnostic instrument must be appropriate for all Australian children, suitable for different ages and must provide a guide to referral pathways to appropriate health professionals
• Sharing of information and resources and networking through a website and conferences
• FASD should be on the agenda at community events and medical conferences