Developing and testing a parenting intervention and manual for children with fetal alcohol spectrum disorder (FASD)

Drinking alcohol in pregnancy can cause a baby to be born with 'Fetal Alcohol Spectrum Disorders' (FASD). FASD is common, possibly affecting over 3% of UK children. Children with FASD have difficulties with behaviour, learning and school, and coping with adult life. Unfortunately a lot of people with FASD end up getting into trouble and being put in prison. Although it is common, FASD is difficult to diagnose. Some people with FASD have distinctive facial features as well as difficulties with learning. FASD is especially difficult to diagnose if the person has the learning difficulties but does not have the facial features. Even if a doctor does diagnose FASD there is not very much support available for the carers and children. Children with FASD often have challenging behaviour, but at the moment we do not know the best way for parents and carers to cope with this. This is because children with FASD do not behave like other children with learning difficulties. The parenting programmes that are currently used do not work.

We want to develop and test a special training programme for parents and carers of children with FASD. We will first look at all the latest research about how the brain of the child with FASD is different. We will then look for the best features from other parenting programmes. This might include features from programmes developed for children with autism or other learning and behavioural difficulties. We will then design an 8 to 10 week parenting course with the help from experts from the UK and abroad. Our team of experts will also include parents who have had experience of raising a child with FASD. Our team includes psychiatrists, psychologists, FASD researchers, an alcohol misuse expert, a statistician and a therapist. We will test the intervention on two groups of families affected by FASD. One group of parents will be trained by our researcher. The other will be trained by a different professional, like a social worker. This will help us to discover whether it is possible for other different kinds of workers to deliver our programme.

At this testing stage we want to find out whether the parents or carers and the children like the programme and whether they think it is helpful. We will use questionnaires to ask how stressed the parents or carers and children are feeling. We will also ask other questions about the child's health and behaviour. We will ask these questions before and after the families have taken part in the programme. We will ask whether completing the questionnaires was straightforward. We will ask the parents and carers their opinions of the course and whether they feel that they understand more about their child's behaviour.

Later, we will use this information to design a larger, more reliable test, called a randomised control trial. This later trial will compare whether parents and children who have done the FASD parenting programme are less stressed than parents and children who have done a normal parenting programme. This larger test will be able to tell us whether using the parenting programme especially designed for FASD decreases the child's difficulties in behaviour and increases their success at school.

We recently talked to a group of 13 parents and carers of children with FASD. Everyone we spoke to was supportive of this project to develop a parenting intervention. Everyone said they wished their child could take part. We will continue to talk to groups of parents and carers as the research develops. If the parenting programme is successful we hope that children would do better at school, have a better quality of life, and not end up in trouble with the law. We have made plans for how we will tell health services, local authorities and the Government about our research. This is so that if the parenting programme is successful it can be put in place as soon as possible to help all those affected by FASD.

Fetal Alcohol Spectrum Disorders (FASD), which are caused by prenatal alcohol, lead to lifelong impacts on the child, their families and wider society, causing challenging behaviour, educational dysfunction and subsequent mental ill-health and criminal justice involvement. The biggest difficulty is knowing how to manage complex children and the pressures this puts on parental relationships. There is a lack of appropriate information and training programmes to guide parenting. We aim to develop a bespoke parenting intervention for the unique needs of those with FASD. Our objectives are to: 1. develop the intervention using theory and clinical experience; 2. test and refine in collaboration with experts and parents/carers; 3. evaluate the fidelity when delivered by different professionals; 4. evaluate the acceptability of the intervention and the outcome measures; and 5. design the full RCT for the developed programme against current treatment as usual.

Phase 1 scopes the resources and confirms current knowledge; phase 2 builds the programme and produces a logic model illustrating the components and theoretical underpinning. Phase 3 takes expert input from partners, parents/carers and stakeholders using individual case interviews and group consultation. Early models will be tested in a 2 day workshop. The intervention will be role-played with two collaborating families, and observed by UK and international experts, who will contribute to refining the intervention. Phase 4 is manualisation. Phase 5 will test the intervention on two groups of 6-9 families. One group will be led by a member of the research team and the other by a social care professional who is not involved in the development of the intervention. Finally, phase 6 documents the feasibility, acceptability and utility of the programme and prepares the full trial protocol. If successful, this programme will support parents and reduce the risk of costly consequences such as poor mental health and crime.

The key beneficiaries of this research include:

i) Children (aged 7 to 10years) and families impacted by FASD. This early phase of research is primarily intended to design and develop the intervention. In the event that the main study shows the intervention is effective we would expect: parents/carers to have greater self-efficacy at parenting a child with FASD; children and parents/carers to be less stressed and have an improved quality of life; behaviour in school to improve and children would be better able to engage. Longer term, as young adults they could have a lower risk of mental ill-health and drug/alcohol problems. They may be able to avoid impulsive behaviour that can lead them into trouble with the law. It will also help to reduce the blame that is experienced by parents, where the lack of effectiveness of current programmes is assumed to be because parents are not delivering the intervention properly, rather than considering that the intervention may not be effective. By creating a manual, we will facilitate the delivery by multiple professionals. This would reduce the burden of direct care needs from health services, which are stretched for resource both in the UK and internationally. Many child and adolescent mental health services (CAMHS) teams work in collaboration with online/third sector organisations to deliver interventions for less complex problems, allowing a resource-restricted service to focus on the most complex cases. For a disorder as common as FASD, it is imperative to develop an intervention that does not require healthcare practitioners for delivery. The intervention would be commissioned and delivered by a variety of potential providers including social care, education and health. FASD charities could offer training on it, as the manual will be made freely available for use.

ii) Those with undiagnosed FASD. One of the reasons for not diagnosing children at present is the lack of suitable interventions. There is a likelihood that as the result of any effective intervention there will be an accelerated pathway towards earlier diagnosis due to provision of appropriate user services.

iii) Government. As well as new knowledge to help develop policies on FASD, we will also support advocacy/support agencies in identifying approaches that can make a difference to families. Currently evidence is still sparse for interventions, therefore increasing the evidence base on FASD as a whole will support any legislative framework development.

iv) Local authorities and wider society. The costs of FASD are unknown for the UK, but could be £2.5 billion per annum (Alcohol Concern, 2014, estimate based on UK birth cohorts and international lifetime costs). Preventing the secondary disabilities should reduce some of the wider costs such as social care and criminal justice. Over 20% of some criminal justice populations are made up of individuals with FASD diagnoses. An economic evaluation would form part of the main study.

v) The local authorities within Greater Manchester (GM), part of the GM Health and Social Care Partnership (GMHSCP). GMHSCP is likely to be an early beneficiary. GMHCSP have calculated the enormous cost of the harms from alcohol exposure in pregnancy, and committed £1.6m to prevention of FASD. Our letter of support from GMHSCP shows that they committed to supporting effective secondary prevention, i.e. the prevention of harms accruing to individuals with FASD. We already have an effective partnership with GMHSCP as we assisted with the development of the business case for investment into the prevention of alcohol exposed pregnancies.

vi) Up to 18 families affected by FASD participating in the test run of this early phase development may directly benefit. At the very least they may learn more about FASD and may gain more confidence in parenting. They will gain reassurance that unsuccessful parenting strategies in the past are not their fault. They will also have their voices heard.