Fetal alcohol spectrum disorders: Current issues in awareness, prevention and intervention
FASD: Prevention and intervention in Australia
What do we know about prevention strategies?
In Australia, attempts to address FASD through prevention and intervention strategies have been ad hoc and largely directed towards select Indigenous communities (Elliot, Coleman, Suebwongpat, & Norris, 2008; FARE, 2013; NIDAC, 2012). The growing recognition of FASD has led to the desire for a more strategic approach to the evaluation and implementation of effective prevention and intervention programs. However, there is still little empirical guidance about effective strategies, particularly in the Australian context.
A range of preventative approaches has been suggested. These include educational approaches targeting the community and health professionals, as well as specific groups such as adolescents and women of childbearing age, pregnant women, women at high risk of alcohol abuse and partners of pregnant women (NIDAC, 2012; Pyett, 2007).
Primary prevention approaches include universal education messages directed towards public and professionals alike about the dangers of consuming alcohol when pregnant or when considering pregnancy. These approaches aim to reduce the per capita alcohol consumption, thereby reducing the risk of all alcohol-related harms, including FASD (Bower, Hayes, & Bankier, 2012). Universal prevention strategies have been shown to decrease the prevalence of FASD (but not FAS) and to increase knowledge about the effects of alcohol consumption during pregnancy. This suggests that universal strategies have a positive impact on lower risk groups (Chersich et al., 2012).
Secondary prevention approaches target women at risk, in this instance women of reproductive age and/or who may be pregnant and who consume alcohol. Secondary prevention strategies might include the adoption of screening tools for determining alcohol consumption, the provision of contraceptive advice to women at risk, the development of early intervention or brief intervention services for women at risk and the development of programs targeting partners of women at risk (Burns, Elliot et al., 2012; Floyd et al., 2009). There is some evidence in support of the use of screening tools and brief motivational-oriented interventions for women at risk (Floyd, Weber, Denny, & O'Connor, 2009; Rendall-Mkosi et al., 2013). The Pregnant Pause campaign is one example of an initiative targeting partners of pregnant women (see <www.pregnantpause.com.au> for more information).
Tertiary programs may be suitable for women who are drinking at high-risk levels during pregnancy or already have a child with FAS or FASD (Bower et al., 2012). These approaches are generally implemented by health professionals, ideally in a multi-disciplinary setting. They target mothers' substance-use issues, aiming to prevent further alcohol-exposed pregnancies and support the health and nutritional status of the mother (and fetus) (NIDAC, 2012). These interventions should seek to address as many of the multiple antecedent risk factors as possible.
What do we know about interventions that support children with FASD?
While FASD is likely to reflect permanent changes to brain development, early and coordinated interventions may nonetheless make a significant difference to the lives of children with FASD. Early intervention may reduce the risk of the longer-term negative social impacts of FASD (often referred to as secondary disabilities) that come from poor understanding and management of children's primary difficulties (Spohr et al., 2007; Streissguth et al., 2004).
Service models and interventions for children with FASD
Diagnostic clinics and multidisciplinary teams
The Australian FASD collaboration recommends the adoption of interdisciplinary clinics, similar to those in North America and Canada. These are principally staffed by paediatricians and psychologists trained in FASD assessment, with many also employing occupational therapists and family therapists/ case workers. Interdisciplinary diagnostic models can be adapted to suit the needs of regional and remote settings and assessment methods can be adapted to account for the cultural needs of Australian children. Examples of how this might be done include employing local Indigenous community expertise, the use of telemedicine facilities, mobile team models and the modification of standardised psychometric assessments to suit local populations (Elliot, Peadon, & Mutch, 2012). An agreed upon procedure for diagnosis and assessment is needed to advance prevention and intervention efforts in Australia (Watkins et al., 2013).
FASD is a lifelong disability affecting many areas of the child's life. Therefore the best outcomes for children are likely to be when there is good coordination between medical, educational and community services and other professionals.
The key worker model originated in the United Kingdom as a model of care for families with a child with a disability (Greco, Sloper, Webb, & Beecham, 2005). It advocates that those surrounding the child recognise that FASD is a brain-based disability, and aims to develop a common understanding of FASD as such:
the model holds that when all who live and work with the child/youth have a common understanding of the disability, then the behavioural symptoms associated with FASD will be reinterpreted, expectations for the child/youth will shift, and appropriate environmental accommodations can be identified and implemented, and positive outcomes for families, including reduced stress and increased stability will ensue. (Hume et al., 2009, p. i.)
Through this approach, the program aims to reduce the risk of the child developing some of the secondary difficulties identified by Streissguth and colleagues (2004). The key worker plays a central role in enacting this treatment orientation. Their role is to educate family, service providers, teachers and any other individuals in a child's life; to develop accommodations, particularly within the area of education, and provide advocacy and linking to other services as needed. The key worker model typically also incorporates some form of parent support program. Evaluations of the key worker program indicate families gain knowledge about FASD, report positive gains in emotional and mental health, and report a trend towards increased parental confidence. The holistic, family-centred approach, flexibility regarding the duration and frequency of contact with family, and the multifaceted nature of the support are cited as the effective elements of this model (Hume et al., 2009, p. 75). However, evaluations of this model are limited in size, program components vary between them and there does not yet appear to be any assessment of whether or not this model leads to improvements in placement stability over time for children in foster care (Hume et al., 2009).
The promising practices (also called communities of practice model), originating in Canada, is another casework practice model, specifically designed to meet the needs of children placed in out-of-home care (Badry & Pelech, 2011). The promising practices revolve around the provision of respite, high quality collaboration, training, and consistent and on-going worker contact (Badry & Pelech, 2011). Specific recommendations include the screening and follow-up assessment of all children in care suspected of having experienced prenatal alcohol exposure; education and awareness raising for families of children with FASD; 12 hours of specialised FASD training for workers and foster carers prior to placement; a minimum of once a month face-to-face meetings with caseworkers and family and 48 hours of respite care per month per child (Pelech, Badry, & Daoust, 2013). Evaluations suggest that implementation of these practices is linked to more positive interactions between parents and children, and a trend towards a decrease in risk behaviours and lowered incidence of placement change (Badry & Pelech, 2011). Frequency of worker contact was associated with the quality of parent-child interactions and a decline in risk behaviour. Communication with a support worker trained in FASD is seen an important contributor to placement stability in this model (Pelech et al., 2013).
Targeted skills interventions
There is some support for the utility of targeted interventions, aimed at specific skills affected by FASD. The conclusions that can be drawn are limited by the diverse nature of the interventions that have been assessed and the lack of longer-term follow-up in these studies. There is still a need for quantitative, longitudinal research into interventions for children with FASD.
Recent reviews of the published literature (Paley & O'Connor, 2011; Peadon, Rhys-Jones, Bower, & Elliott, 2009), however, identified a number of interventions that showed promise. Although these were diverse, many involved parallel caregiver training (see Table 2 for examples of targeted skill interventions). Interventions incorporating a parent/caregiver training component include Children's Friendship Training (O'Connor et al., 2006; 2012), neurocognitive habilitation using the Alert program (Wells, Chasnoff, Schmidt, Telford, & Schwartz, 2012); parent-child interaction therapy (Bertrand, 2009), and the Families Moving Forward behavioural consultation (Bertrand, 2009).
While these interventions showed promise, the evidence is not yet substantial enough to support any one of these interventions over another. The published interventions were very narrow in focus; studies generally lacked blind or adequate control groups and were drawn almost exclusively from clinic-referred populations. Therefore, it is difficult to isolate the contribution of parental factors - such as changes in perception, stress and skill attainment over time - from child-related changes.
|Intervention||Author||Focus of intervention||Outcomes|
|Children's Friendship Training||O'Connor et al., 2006; O'Connor et al., 2012.||Social skills||Children and their parents/carers took part in 12 weekly sessions teaching children the skills to better interact with peers such as making friends, playing together, entering a group of children already playing and conflict resolution. Parents were taught how to support their children in social situations and to practice the skills with their children outside the therapy sessions. Parents noted improved social skills and reduced problem behaviours in the children who received the Friendship Training compared to children in a "standard treatment" comparison group.|
|Parent-child interaction therapy||University of Oklahoma Health Science Centre (Bertrand, 2009)||Parent-child interaction||Parent-child interaction therapy and the comparison parent support intervention (parent working with therapist to manage behaviour and self-care) both reduced levels of parenting stress. There were no differences between the two interventions - that is, they reduced stress by similar levels. Parent-child interaction therapy is limited as it focuses on the parent-child interaction and doesn't place enough weight on the brain damage caused by prenatal alcohol exposure.|
|Families Moving Forward||University of Washington (Bertrand, 2009)||Parenting skills, connection with other services||Families Moving Forward aimed to modify parent attitudes and responses to the child's problem behaviour. Practitioners also aimed to link families with other services. Parents were more satisfied and felt their needs were better met and perceptions of their child's behaviour problems were less negative.|
|Parent Education Workshop||Kable, Coles, Strickland, & Taddeo, 2012||Parenting skills and knowledge||A face-to-face workshop improved knowledge of FASD and taught principles to assist their child to regulate their behaviour. Parents and carers reported the workshop to be more useful than an Internet program or being given reading material.
Parents and carers who attended the workshops reported lower scores on a measure of child behaviour problems.
|Using video games to teach fire and street safety skills||Coles, Strickland, Padgett, & Bellmoff, 2007; Padgett, Strickland, & Coles, 2006||Safety skills||Video games were effective in teaching children basic steps of what to do when crossing a street or in case of a fire in the house. Most children were able to remember the safety skills a week later.|
|Maths Interactive Learning Experience||Kable, Coles, & Taddeo, 2007; Coles, Kable, & Taddeo, 2009||Mathematics training, parenting skills and knowledge||A maths program that included a slower pace of instruction, tangible tools to help children visualise the number operations and repetitive experiences to assist children with FASD to improve their mathematics skills more than with their peers in a regular classroom. Parents and teachers were all educated about FASD and how to work with the children to support their learning.|
|Language and literacy intervention||Adnams et al., 2007||Literacy training||After half-hour sessions, twice weekly for 19 weeks focusing on improving the basic skills necessary for reading and writing. Children with FASD showed minor improvements in their basic language skills. Parents or carers were not involved.|
|Working memory intervention||Loomes, Rasmussen, Pei, Manji, & Andrew, 2008||Short-term memory training||Teaching children with FASD to whisper what they have to remember over and over in their head did help them to hold on to more information.
Older children were better at taking up the skill than younger children.
|Computerised attention training||Kerns, Macsween, Wekken, & Gruppuso, 2010||Attention training||16 hours of computer-based attention training, with support from a research assistant or teacher, improved attention on a range of measures. Children also showed small improvements in reading and maths abilities from being better able to sustain attention.|
|Neurocognitive habilitation training (based on the ALERT program)||Wells et al., 2012||Self-regulation and parenting skills training||Over 12 weeks children with a FASD and their families were taught skills to improve their self-regulation in the home and school environments. Children showed improved executive functioning and emotional regulation.|
At this point, it may be more helpful to think in terms of promising principles when working with families and children affected by FASD. These include:
- early diagnosis and intervention to prevent the likelihood of secondary disabilities;
- ensuring a no-blame, no-shame approach when engaging with families affected by FASD;
- education and training for all services and professionals surrounding the child about the brain-based nature of the cognitive, learning and language difficulties experienced by the child;
- providing an emphasis on supportive case management involving regular face-to-face support and advocacy, ensuring a common language and understanding;
- placing an emphasis on developing caregiver skills in managing and advocating for environmental accommodations and consistency across settings;
- explicitly teaching memory, attention, organisation and social skills to children and to caregivers in parallel, in order to assist children's learning and transitions; and
- increasing awareness among a range of professionals including doctors, teachers, family support workers, and youth justice professionals about the nature and implications of FASD for young people.