Intergovernmental committee on Drugs working party on Fetal Alcohol Spectrum Disorders
Fetal Alcohol Spectrum Disorders in Australia: An Update
6.3 Australian approaches to the prevention of FAS and FASD
In a survey of health professionals in Western Australia, knowledge of FAS was limited – only 12 percent of health professionals identified the four diagnostic features of FAS, only 44 percent who saw pregnant women routinely asked women about alcohol use in pregnancy and only 25 percent routinely provided information on the consequences of alcohol use in pregnancy (Payne et al. 2005). Most health professionals wanted educational resources for themselves and for women about alcohol and pregnancy. In a recent telephone survey of women of childbearing age in WA, most women themselves thought that health professionals should be asking women about how much and how often they drink during pregnancy and 92 percent agreed that health professionals should advise women not to drink (Peadon et al. 2007). Nevertheless, amongst women who drink alcohol (90 percent of those surveyed), only 75 percent said that they would stop drinking if they were pregnant. In a survey conducted a decade earlier, only 41 percent of women abstained from alcohol in pregnancy (Colvin et al. 2007)*.
In WA a project was conducted to provide health professionals with information about alcohol and pregnancy and FASD. Based on a thorough literature review, focus groups and key informant interviews with health professionals and women of childbearing age, three resource materials were developed: an A4 laminated fact sheet; a 38 page information booklet; and a wallet card for women. The resources were distributed to all general practitioners, obstetricians and paediatricians in WA, as well as to all allied health professionals in the public sector, all Aboriginal health workers and all community nurses. A day-long symposium, three satellite broadcasts to rural areas and presentations to several other professional groups were also conducted. Six months after distribution of the resources, the earlier health professional survey was repeated (Payne et al. 2005) to measure any changes in knowledge or practice.
Over two thirds of health professionals were aware of the resources and a third to a half of health professionals stated that the resources had changed or had influenced their intention to change their practice (Payne et al. 2011; Payne et al. 2011). This study has gone some way to improving knowledge about FASD in Australia and is an important step in preventing FASD (see also Chapter 7). However, there is still much to be done in this area and even these small gains need to be maintained.
In addition to improving knowledge and practice regarding alcohol use in pregnancy amongst health professionals and women, there are several other factors to bear in mind when considering strategies for prevention of FASD. Any strategy used must be appropriate for the target group – for example, a different strategy would be needed for risky drinkers compared with low-moderate drinkers and for some Indigenous communities. The acceptance of alcohol use in Australia and the social contexts in which alcohol is consumed are critically important issues to consider, as are perspectives other than health (e.g. education, justice, child protection) and perspectives other than alcohol (e.g. concomitant cigarette smoking, use of other drugs). Perhaps the most important issue in Australia is the lack of use of consistent
and reliable methods of ascertaining and recording both alcohol use in pregnancy and the diagnosis of FASD. Early identification of women and infants at risk may enable prevention of FASD in a family in subsequent children.
There have been some notable universal strategies used in Australian communities to decrease consumption and risky alcohol use on a population basis. These strategies are well documented in the literature and have resulted in sustained reductions in harm (Loxley et al. 2004). However, FAS and FASD have not been listed in many of these studies. It is unlikely that the extent of this effect will be demonstrated prior to routine diagnosis of FASD in the population.
There have been a number of community initiated education programs in remote Aboriginal communities including campaigns in Kununurra and community education program in association with the Lililwan project in the Fitzroy Valley, WA. Responding to community concern over the risks of maternal alcohol use, a 2008 a prevention program was initiated in the East Kimberley region of WA through the Ord Valley Aboriginal Health Service (OVAHS) which services Kununurra. The prevention program targeted numerous groups including antenatal clients who were assessed through their pregnancy and information was obtained on their alcohol use and knowledge of FASD. In addition to targeting antenatal clients, all women of child bearing age were targeted through local schools, the crisis centre and community events. Contraceptive advice was a key component given the link between unplanned pregnancy, high levels of alcohol consumption and FASD. The program also targeted all OVAHS staff to provide education and training on alcohol awareness, FASD and contraception. Education was also provided to Aboriginal men; although appreciating men are not traditionally involved in the antenatal process it was acknowledged they could support partners to avoid alcohol during pregnancy. There was also broad and continual community consultation in the wider Aboriginal community and organisations that provide services (Bridge 2011). The program developed a number of resources, including a brochure called “No grog for 9” promoting abstinence throughout pregnancy.
Case study: The Victorian Aboriginal Community Controlled Health OrganisationThe Victorian Aboriginal Community Controlled Health Organisation (VACCHO), the peak body for Aboriginal community controlled health organisations in Victoria, has developed a holistic approach for Aboriginal communities and community health services around health, nutrition and alcohol use in pregnancy through the research and awareness project ‘Healthy pregnancies, healthy babies for Koori communities’. Conducted in collaboration with Onemda VicHealth Koori Health Unit, the aim of the project was to identify levels of knowledge and concern around the effects of alcohol use during pregnancy and to develop appropriate resources and training material based on these findings. The project was funded by the Victorian Premier's Drug Prevention Council . A resource kit is available and includes information on FAS (see Onemda VicHealth Koori Health Unit weblink ). The project affirms that there is no safe level of alcohol intake, asserting that ‘Less is better, none is best’. The approach is based on Victoria having a largely urban Indigenous community, with lower rates of nutritional risk factors, and aims to engage the moderate drinker rather than women with a serious drinking problem (see Victorian Drug and Alcohol Prevention Council website). The effectiveness of this strategy remains to be evaluated.
Case Study: A Queensland Indigenous community’s response to preventing Fetal Alcohol SyndromeThe prevalence of FASD in Australian Indigenous communities is not known. It is likely that Indigenous children with FASD are not being diagnosed and are thus missing opportunities for treatment to minimise secondary disabilities. Information about alcohol use in Indigenous pregnant women is limited due to a lack of routine antenatal screening and under-reporting of alcohol use. For example, in one rural Indigenous community in Queensland, during a twelve month period, 92 percent of women drank alcohol at harmful and hazardous rates (more than seven drinks in any one session), 100 percent used cannabis and 17 percent used paint as another form of substance use. In the community binge drinking was common and women gave a number of reasons to explain why they drank, including domestic violence, sexual abuse, physical abuse and shame.
A total of 614 children aged between 0-12 years were born between 1993-2005, 540 of whom were exposed to alcohol in utero. Many of these children have abnormal facial features, behavioural, developmental, language and learning problems, and growth failure: however, few have had adequate medical assessments and none has received a diagnosis of FASD. Failure to assess children exposed to alcohol in utero and to diagnose FASD when appropriate limits opportunities for educational and medical interventions for the child and access to government support. Failure to identify mothers at risk limits opportunities for providing treatment of alcohol misuse and for preventing the birth of another affected child (Hayes 2002; Hayes 2003; Apunipima Cape York Health Council 2007).
The Health Literacy ProgramEducation programs regarding alcohol in pregnancy must be culturally sensitive and acceptable to Indigenous communities and developed in collaboration with Indigenous people. Adaptation of programs developed for one community may be necessary for use in different communities because levels of literacy and numeracy and language and patterns of alcohol use vary widely.
A community-based health literacy model that aimed both to increase awareness of the dangers of alcohol use in pregnancy and FASD and to improve health literacy was developed and trialled in two communities in Cape York. A health literacy approach is part of a life-long learning strategy which not only provides information but also encourages a lifelong approach to seeking health advice and modifying behaviour accordingly.
The aim of the project was to use an education intervention to decrease maternal alcohol consumption and consequently the incidence of FASD in the community. The four specific aims were to:
- increase community awareness and knowledge of the effects of alcohol on unborn babies;
- increase literacy skills in relation to health promotion materials to increase participants’ sense of control over their own health decisions;
- identify and develop appropriate FASD resources for use during community events and activities;
- facilitate the development of a sustainable health education ethic within the communities.
The program spans six months and is facilitated by a project team, including Aboriginal facilitators trained in health literacy and a public health researcher experienced in health literacy and action research methods. The team visits communities to facilitate problem-based workshops with community participants and health workers. The workshops facilitate:
- development of resource materials about FASD that are specific to each individual community;
- improvement in health literacy skills (through reading, writing and comprehension tasks and critical evaluation of health information);
- understanding of alcohol use and misuse and its effects on the body;
- understanding of the effects of alcohol use in pregnancy including FASD and its impact on child development and;
- improved knowledge of reproductive health.
Prior to program implementation, baseline surveys were carried out to measure the literacy levels of participants in the program and to determine participants’ levels of current knowledge, attitudes and perceptions regarding the effects of alcohol on unborn babies. Information gained was used to develop a Memorandum of Understanding and a strategic plan for sustaining health promotion in relation to the effects of prenatal alcohol exposure. The plan included strategies to manage FASD and was tailored to the needs of each community participating in the project. Following program completion, participants’ knowledge, attitudes and practice were reassessed to determine the impact of the program.
Kowanyama Community, Cape YorkA twelve month program was initiated in Kowanyama on May 21, 2002. The community council, Justice Group and the Mothers and Babies Centre were contacted in writing regarding a preliminary visit to community to introduce the team and the type of education program it would provide. The FASD team made twenty visits (ten blocks of two weeks) to the community throughout the year, returning to Cairns in between. On its preliminary visit, the project team discussed the community’s needs regarding alcohol misuse in depth. The team was introduced to various organisations in the community. It was a major concern of the community that too many external service providers do not stay in the community for very long. Consequently it became a priority for the team to spend a considerable time in the community to engage with community in their own time and space. A range of community meetings and informal discussions took place with pregnant women, their families, women in their reproductive years, partners and young women and men. Discussions were also held with health staff, community workers, and other relevant government agencies including education, police, community groups, mothers and babies’ centres, kindergartens and Community Development Employment Project (CDEP) workers, to encourage their support and cooperation with the
development and implementation of the FAS strategy.
The first workshop was held on the 17th June 2002. A meeting was held with the women’s group at the mothers and babies centre regarding recruitment for the two week workshop, with a list of names provided to the team by the Coordinator. This is an example of a community owned program for sustainable education. A series of FAS presentations were made to ensure the broadest possible coverage of the community. The workshops introduced communities to the basic facts surrounding FAS and assess their awareness and concern regarding the issue.
A variety of community-based initiatives continue to operate in the Cape York area.
- High levels of per capita consumption and risky drinking levels are associated with high levels of harm in the community. There is a range of universal strategies that are known to reduce consumption and risky alcohol use that can be implemented and will reduce associated harm at a population level.
- Prevention strategies should be informed by known correlates of FASD if they are to be appropriately targeted and effective.
- There is a lack of published evidence on evaluated prevention strategies to inform development in the Australian context.
- Health professionals’ knowledge of FASD is often limited and they may lack confidence to address the issue of alcohol use in pregnancy with their clients or patients. However, women feel that health professionals should ask questions about alcohol use in pregnancy and provide advice.
- Knowledge about FASD should be part of the core competencies of new graduates in the health professions and part of postgraduate training.
- A range of resources have been developed in WA for health professionals and have been shown to be effective in improving knowledge and influencing clinical practice.
- Prevention efforts should be appropriate for the target group, considering the context in which drinking occurs and the complexity of issues that women may be facing. Strategies should be aimed at primary, secondary and tertiary levels.
- Programs for Indigenous communities must be culturally sensitive and informed by local needs, including patterns of drinking and literacy levels. They should be developed and implemented with input from the local community.
- A variety of work needs to be undertaken before informed development of effective, evidence-based prevention strategies can occur. A health literacy program currently underway in two Aboriginal communities will contribute to this process.
- In order to develop strategies for FASD prevention in Australia, we need:
- Documentation of existing prevention strategies in Australia.
- A systematic review of the effectiveness of prevention programs.
- A national prevention strategy of alcohol use in pregnancy and FASD.
- A commitment to evaluating prevention strategies implemented in Australia.
* Further details of Australian health professionals’ knowledge and practice in this area may also be found in Chapter 7: Health professionals’ knowledge and practice regarding alcohol in pregnancy and FASD.