Objective: To measure the knowledge, attitudes and practices of health professionals regarding fetal alcohol syndrome (FAS) and alcohol use during pregnancy. Method: A postal survey of a representative random sample of health professionals was conducted in Western Australia (WA) in 2002/03. 1,143 (79%) of 1,443 eligible health professionals completed the survey (87 Aboriginal Health Workers, 286 allied health professionals, 537 community nurses, 170 general practitioners and 63 obstetricians). Results: Of 1,143 health professionals, 12% identified all four essential diagnostic features of FAS. Most (95%) had never diagnosed FAS. Although 82% believed that making a diagnosis of FAS might improve treatment plans and 85% agreed FAS was preventable, 53% said the diagnosis might be stigmatising. Only 2% felt very prepared to deal with FAS and most wanted information for themselves and their clients. Of the 659 health professionals caring for pregnant women, only 45% routinely ask about alcohol use in pregnancy, only 25% routinely provide information on the consequences of alcohol use in pregnancy and only 13% provide advice consistent with NHMRC guidelines on alcohol consumption in pregnancy. Conclusion: Health professionals have identified the need for educational materials for themselves and their clients. Implications: FAS is likely to be under‐ascertained in Australia due to a lack of knowledge of FAS by health professionals. Until this lack of knowledge is addressed, opportunities for diagnosis and prevention of FAS will be limited.

BackgroundTo explore women's alcohol consumption in pregnancy, and potential predictors of alcohol consumption in pregnancy including: demographic characteristics; and women's knowledge and attitudes regarding alcohol consumption in pregnancy and its effects on the fetus.MethodsWe conducted a national cross-sectional survey via computer assisted telephone interview of 1103 Australian women aged 18 to 45 years. Participants were randomly selected from the Electronic White Pages. Pregnant women were not eligible to participate. Quotas were set for age groups and a minimum of 100 participants per state to ensure a national sample reflecting the population. The questionnaire was based on a Health Canada survey with additional questions constructed by the investigators. Descriptive statistics were calculated and logistic regression analyses were used to assess associations of alcohol consumption in pregnancy with participants' characteristics, knowledge and attitudes.ResultsThe majority of women (89.4%) had consumed alcohol in the last 12 months. During their last pregnancy (n = 700), 34.1% drank alcohol. When asked what they would do if planning a pregnancy (n = 1103), 31.6% said they would consume alcohol and 4.8% would smoke. Intention to consume alcohol in a future pregnancy was associated with: alcohol use in the last pregnancy (adjusted OR (aOR) 43.9; 95% Confidence Interval (CI) 27.0 to 71.4); neutral or positive attitudes towards alcohol use in pregnancy (aOR 5.1; 95% CI 3.6 to 7.1); intention to smoke in a future pregnancy (aOR 4.7; 95% CI 2.5 to 9.0); and more frequent and higher current alcohol consumption.ConclusionsWomen's past pregnancy and current drinking behaviour, and attitudes to alcohol use in pregnancy were the strongest predictors of alcohol consumption in pregnancy. Targeted interventions for women at higher risk of alcohol consumption in pregnancy are needed to change women's risk perception and behaviour.

BackgroundWhen conducting research with Indigenous populations consent should be sought from both individual participants and the local community. We aimed to search and summarise the literature about methods for seeking consent for research with Indigenous populations.MethodsA systematic literature search was conducted for articles that describe or evaluate the process of seeking informed consent for research with Indigenous participants. Guidelines for ethical research and for seeking consent with Indigenous people are also included in our review.ResultsOf 1447 articles found 1391 were excluded (duplicates, irrelevant, not in English); 56 were relevant and included. Articles were categorised into original research that evaluated the consent process (n = 5) or publications detailing the process of seeking consent (n = 13) and guidelines for ethical research (n = 38). Guidelines were categorised into international (n = 8); national (n = 20) and state/regional/local guidelines (n = 10). In five studies based in Australia, Canada and The United States of America the consent process with Indigenous people was objectively evaluated. In 13 other studies interpreters, voice recording, videos, pictures, flipcharts and “plain language” forms were used to assist in seeking consent but these processes were not evaluated. Some Indigenous organisations provide examples of community-designed resources for seeking consent and describe methods of community engagement, but none are evaluated. International, national and local ethical guidelines stress the importance of upholding Indigenous values but fail to specify methods for engaging communities or obtaining individual consent. In the ‘Grey literature’ concerns about the consent process are identified but no solutions are offered.ConclusionConsultation with Indigenous communities is needed to determine how consent should be sought from the community and the individual, and how to evaluate this process.Electronic supplementary materialThe online version of this article (doi:10.1186/s12910-016-0139-8) contains supplementary material, which is available to authorized users.

on behalf of the END RHD CRE Investigators Collaborators Acknowledgements: • Children, families and communities living with RHD-We thank the Aboriginal and Torres Strait Islander people for sharing their stories in the Endgame Strategy, and acknowledge that the research and data in this publication reflect the experiences of Aboriginal and Torres Strait Islander people and communities affected by the ongoing trauma of ARF and RHD. • END RHD Review Working Group-We thank the following members of the END RHD Alliance, who formed an expert working group to review content of the Endgame Strategy for feasibility and acceptability, including review from a cultural perspective:

BackgroundAlcohol exposure in pregnancy is a common and modifiable risk factor for poor pregnancy and child outcomes. Alcohol exposure in pregnancy can cause a range of physical and neurodevelopmental problems in the child including the Fetal Alcohol Spectrum Disorders (FASD). In order to improve prevention strategies, we sought to describe the knowledge and attitudes of women of childbearing age regarding alcohol consumption during pregnancy and its effects on the fetus.MethodsWe conducted a national cross-sectional survey via computer assisted telephone interview of 1103 Australian women aged 18 to 45 years. Participants were randomly selected from the Electronic White Pages. Pregnant women were not eligible to participate. Quotas were set for age groups and a minimum of 100 participants per state to ensure a national sample reflecting the population. The questionnaire was based on a Health Canada survey with additional questions constructed by the investigators. Descriptive statistics were calculated and logistic regression analyses were used to assess associations with participants' knowledge and attitudes.ResultsOf women surveyed, 61.5% had heard about effects of alcohol on the fetus and 55.3% had heard of Fetal Alcohol Syndrome. Although 92.7% agreed alcohol can affect the unborn child, 16.2% did not agree that the disabilities could be lifelong. Most women agreed that pregnant women should not drink alcohol (80.2%) and 79.2% reported having negative feelings towards pregnant women drinking alcohol. Women with higher education levels were more likely to know the effects of alcohol consumption in pregnancy (adjusted OR 5.62; 95% CI 3.20 to 9.87) but education level and knowledge were not associated with attitude.ConclusionsThere was a disjunction between knowledge and attitudes towards alcohol consumption in pregnancy. These findings will assist in developing effective health promotion campaigns to reduce fetal alcohol exposure and subsequent fetal damage.

Overall, the rates of encephalocele, anencephaly, and spina bifida have fallen to a similar extent in association with promotion of folic acid supplements and voluntary fortification. No such falls were seen for Aboriginal infants. These data will provide a useful baseline against which to monitor the effects of mandatory fortification on NTDs when it is introduced in Australia in September 2009.

Objectives To examine alcohol‐use disorders in pregnant women and the extent of under‐reporting. Design Population‐based cohort study. Setting Western Australia. Population Women with a birth recorded on the Western Australian Midwives Notification System (1985–2006). Methods Mothers with an International Classification of Diseases 9/10 alcohol‐related diagnosis, indicating heavy alcohol consumption, recorded on population‐based health datasets (non‐Aboriginal n = 5839; Aboriginal n = 2583) were identified through the Western Australian data‐linkage system. This ‘exposed’ cohort was frequency matched (on maternal age, year of birth of offspring, Aboriginal status) with comparison mothers without an alcohol‐related diagnosis (non‐Aboriginal n = 33 979; Aboriginal n = 8005). Main outcome measures Trends in maternal alcohol diagnoses in relation to pregnancy for non‐Aboriginal and Aboriginal women. The proportion of children diagnosed with fetal alcohol syndrome (FAS) who had a mother with an alcohol diagnosis recorded during pregnancy. Results The proportion of Aboriginal mothers in Western Australia with an alcohol diagnosis (23.1%) is ten times greater than for non‐Aboriginal mothers (2.3%). There has been a six‐fold increase in the percentage of non‐Aboriginal births with a maternal alcohol diagnosis recorded during pregnancy and a 100‐fold increase for Aboriginal births. Around 70% of the mothers of children diagnosed with FAS did not have an alcohol diagnosis recorded during pregnancy and 18% of the mothers had no record of an alcohol diagnosis. Conclusions Maternal alcohol exposure during pregnancy is significantly under‐ascertained. Given the severe risks to the fetus from heavy prenatal alcohol exposure, assessment and recording of alcohol use should be routinely undertaken in maternity and other health settings.

Aim  The aim of this study was to examine the association between maternal alcohol use disorder and intellectual disability in children. Method  All mothers with an International Classification of Diseases (ICD) 9 and/or 10 alcohol‐related diagnosis, a proxy for alcohol use disorder, recorded on the Western Australian health, mental health, and drug and alcohol data sets were identified through the Western Australian Data Linkage Unit (n=5614 non‐Aboriginal; n=2912 Aboriginal). A comparison cohort of mothers without an alcohol‐related diagnosis was frequency matched on maternal age within maternal Aboriginal status and year of birth of their children. Linkage with the Western Australian Midwives Notification System (1983–2001) identified all births to these mothers (n=10 664 and 7907 respectively). Linkage to the Western Australian Intellectual Disability Database and Register of Developmental Anomalies identified cases of intellectual disability with no identified genetic origin (intellectual disability) (n=1487) and fetal alcohol syndrome (n=66). Odds ratios (ORs) and 95% confidence intervals (CIs) for intellectual disability were calculated using logistic regression incorporating generalized estimating equations and used to estimate population‐attributable fractions. Results  At least 3.8% (95% CI 2.84–4.89%) of cases of intellectual disability could be avoided by preventing maternal alcohol use disorder: 1.3% (95% CI 0.81–1.86%) in non‐Aboriginal and 15.6% (95% CI 10.85–20.94%) in Aboriginal children. We observed a three‐fold increase in the adjusted odds of intellectual disability in children of mothers with an alcohol‐related diagnosis recorded during pregnancy (non‐Aboriginal OR 2.89, 95% CI 1.62–5.18; Aboriginal OR 3.12, 95% CI 2.13–4.56), with a net excess proportion of 3.7% and 5.5% respectively. One‐third (32%) of children diagnosed with fetal alcohol syndrome had intellectual disability. Interpretation  Maternal alcohol use disorder is the leading known risk factor for intellectual disability with no identified genetic origin.