Funding for new parenting course to help families living with condition ‘more common than autism’

The money will be used to test a new parenting course designed to help parents of children with FASD, called SPECIFIC (Salford Parents and carers Education Course for Improvements in FASD outcomes In Children). 

Funding has been provided by the Oglesby Charitable Trust (£150,000), and the NIHR Research for Patient Programme (£250,000), meaning the research team can now test the programme on 120 families.

FASD is caused by drinking alcohol in pregnancy, and can make it difficult for children to communicate, keep friendships, and stay calm and still, among other difficulties. September is International FASD Awareness Month in the UK. September was chosen so that in the ninth month of the year, the world will remember that the nine months of pregnancy should be alcohol free.

Children with FASD have damage to the brain which will last for the rest of their life. They are more likely to be excluded from school and later, as adults, they might suffer from mental ill-health or get into trouble with the law. 

Joint lead investigator Professor Penny Cook from the University of Salford said: “New research shows FASD is very common, affecting 2-4% of children. This makes it more common than autism, but it is underdiagnosed.

“When a child gets diagnosed with FASD, their parents need help and support. A parenting course might help, but there is currently no course especially for FASD. This makes it difficult for doctors to know what to recommend.”

SPECIFIC is a seven-week course where families meet online each week. There are two facilitators: one is a trainer, and the other is an FASD-experienced parent. The course will help carers to understand the nature of the damage caused by alcohol to their child’s brain, and give them strategies to help manage their child’s behaviour.

The research team plans to test SPECIFIC on ten groups of six families and compare findings with families that have not had the course (known as a ‘control group’). Parents’ stress levels and their parenting confidence will be monitored. Once results have been recorded, the control group will also get the training course.

Joint lead investigator Professor Raja Mukherjee from the National FASD Clinic explains: “We hope that eventually the NHS and charities will be able to deliver the course to thousands of families. First, we need to show whether it is easy to get parents to join and complete the programme, and if it appears to improve the lives of families. 

“The course has been developed with the expertise from parents of people with FASD, charities, researchers and clinicians. We also trained nine families using SPECIFIC, and their feedback has helped us to make it even better. We hope that families will continue to be involved by helping us to run the project and analyse the data.”

Jane Oglesby, Trustee of the Oglesby Charitable Trust, said: “We are delighted that our support for this programme has enabled the team to attract funding from other sources, to meet the remaining costs for a high-quality evaluation and enable the programme to run at the scale we have envisaged. It is clear that there is no shortage of need – and, as a Trust, it is our role to make visible, and to respond to, such pressing needs as efficiently as effectively as possible.

“We are pleased to support the significant energy and expertise that Professor Cook, Dr Mukherjee and their team bring to bear on this subject.”