Salford researchers have received £400,000 to support families with children affected by their mother drinking while pregnant.
Dr Alan Price, a lecturer in psychology at Salford University, has designed a parenting course called Specific that supports parents whose children suffer from Fetal Alcohol Spectrum Disorder (FASD).
FASD can causes problems such as managing emotions, impulse control and issues with communication and social skills.
Anna Webster, the mother of a nine-year-old adopted son who suffers from FASD, helped write the manual for the course. Anna felt very alone before becoming involved in Specific.
She said: “Parenting a child with an invisible disease comes with its own particular stresses as it feels completely unseen. I feel unseen. My partner and I feel unseen because so few people recognise it.
“When you’ve got a kid that’s behaving in a way that looks like bad behaviour, that’s how people often see it. If the child could behave well, they would, but they literally can’t and it’s not their fault as it’s a brain-based disability.
“It’s not easy; it’s the hardest thing I’ve ever done and the hardest work you could ever imagine. Any other kind of job is a walk in the park.”
Since becoming involved in the course and research, Anna’s life has been transformed. She explains: “To meet other parents who are going through the same thing is massive because it can be very isolating as you are dealing with a condition that isn’t recognised and is taboo and stigmatised.”
According to the National Institute for Health and Care Excellence (Nice) 3.4% of the UK population suffer from the disorder but it is likely to be a lot more as it is often undiagnosed.
This is partly due to the stigma and blame that comes with FASD. Anna explains: “If it was you and you had drunk before you knew you were pregnant, the guilt and shame and blame for that must be horrendous.
“But because it isn’t recognised, we are in a constant fight for the right services. [My son] is in special school now but we had to fight for that. We had to get a solicitor in order to get the funding.”
Due to there being little help and information available to people, Salford University created a programme called Specific which is a Salford parent and carer education course for improvements in FASD outcomes in children.
The seven-week course sees families meet online each week and it is delivered by a professional trainer and an FASD-experienced parent.
The course aims to help carers understand the damage caused by alcohol to their child’s brain, and help them manage their child’s behaviour.
Dr Price said: “The main thing that we are doing that no one has done before, at least in this country, is test this programme in a randomised control trial.”
The research team plans to test Specific on 10 families and then compare findings with families that have not had the course (known as a ‘control group’). This will allow the research team to see how effective their course is and what they need to improve. All families will end up receiving the training course.
Funding has been provided by the Oglesby Charitable Trust (£150,000), and the NIHR Research for Patient Programme (£250,000).
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