Disability charity Contact a Family and University College London (UCL) have joined forces to launch a national clinical trial – the first of its kind in the UK – that aims to reduce behaviour that challenges in very young children with learning disabilities.
The intervention, which has shown positive outcomes outside the UK, aims to increase parents’ confidence and skills so they can manage their child’s behaviour effectively.
It will be carried out by a research team led by chief investigator, Professor Angela Hassiotis (UCL Psychiatry), and is the first UK trial specifically addressing behaviour that challenges in pre-school children who are often overlooked and are at an elevated risk of developing mental health problems.
Professor Angela Hassiotis, says: “Behaviours that challenge begin in the early years and can lead to worse outcomes later in life and family crisis. Prior research in other countries has found that early intervention can be particularly helpful to improve long term outcomes”.
“We will be testing an intervention programme called ‘level 4 Stepping Stones Triple P (SSTP)’ which will take place over 9 weeks with families recruited from London, the North West and North East of England. The programme draws together psycho-educational and behavioural approaches to parenting, providing a combination of both group and individual support that allows parents to share experiences and build on skills gained.”
All the families involved in the trial will have children who are aged between 3-5 years, have a moderate to severe, but not profound, learning disability and have displayed challenging behaviour for at least two months.
Amanda Batten CEO at Contact a Family says: “We are delighted to support the UCL’s investigation into how offering behavioural support for young disabled children early on can help parents develop the right strategies and prevent longer term problems.
“Contact a Family’s own research showed that over a quarter of families of children aged 0-5 with a disability or additional needs were on a waiting list for behaviour support and a third told us that there is no support in their local area for their child’s needs. We also found that nearly half (48%) of cases the disabled child waited more than a year to access support from Child and Adolescent Mental Health Services (CAMHS).
“Delays or not having the correct support in place when it’s needed can put some children at a developmental disadvantage. It can also lead to a negative impact on family life, with an increased likelihood of sibling and parental emotional distress and mental ill health, family breakdown and expensive residential placements. Given the established importance of the early years, it is disappointing that support needs are not more comprehensively and consistently dealt with for children of this age.”
Nikki Kimber from St Annes in Lancashire is one the study’s parent advisory board. Nikki cares for her 15 year old daughter Antonia who has an incredibly rare chromosome deletion that has caused her chronic developmental delays and behavioural issues.
Nikki says: “I’m not sure what most people think about when they see or hear the description ‘challenging behaviour’. It’s not just about the child that refuses to put their shoes on for school, or throws a bedtime tantrum. It’s a world away from that. It’s being kicked, bitten or punched by your child every day. Having your house trashed, being unable to join clubs, go to parties or go shopping because your child hurts others and screams at the top of their lungs. Challenging behaviour in your child is so isolating and frightening. You feel like an utter failure and the loss of control is overwhelming. It breaks families and steals self- confidence. As a parent it can be confusing and heart breaking.
“A research project like this one, which aims to intervene early and give parents strategies for coping with and managing behaviour is fantastic. It’s so worthwhile to put time, thought and care into learning about challenging behaviour because the long term benefits of keeping families together and parents able to cope are immense. I am delighted to be involved with the project and very hopeful that the future for many families could be changed for the better.”
This national project is the result of a major collaboration between University College London, Blackpool Teaching Hospital NHS Foundation Trust, Birkbeck University of London, Central and North West London NHS Foundation Trust, Guys Hospital, Great Ormond Street Hospital, South London & Maudsley NHS Foundation Trust, Northumberland Tyne and Wear NHS Foundation Trust, Tavistock and Portman NHS Foundation Trust.