'Sleep Buddy' trial aims to help children with ADHD and their families

Families who have children with ADHD are taking part in a trial to see if a digital support website can help them sleep better.

Children diagnosed with attention deficit hyperactivity disorder (ADHD) often struggle with sleep problems.

Sleep Buddy aims to help. It has information and advice about tried and tested ways to help sleep from both sleep experts and parents.

Families of children with ADHD who struggle to sleep are being invited to take part in a new nationwide trial to test Sleep Buddy.

The trial is being run by researchers at University Hospital Southampton, the University of Southampton and Southampton Clinical Trials Unit.

It is part of the £2.2m DISCA project, funded by the National Institute for Health and Care Research (NIHR).

Struggling to sleep

ADHD causes children to be restless, impulsive and struggle to concentrate. In the UK, 3-6% of school-age children are estimated to have ADHD.

Almost two thirds of children with ADHD experience sleep problems. These include finding it hard to get to sleep at bedtime, waking in the night or waking up early in the morning.

This can make the symptoms of ADHD worse, affecting children’s behaviour and schoolwork and quality of life for the whole family.

Winchester mum, Claire Quigley Ward, knows only too well the effect sleep problems can have. Her son, now 14, was diagnosed when he was six years old while her 10-year-old daughter was diagnosed last year.

“Sleep problems have impacted our lives in so many ways,” says Claire. “Whether that’s the getting to sleep, staying asleep, getting adequate amounts of sleep. It has been very difficult, and I think it’s something we still experience challenges with now.”

Claire now hosts the podcast ‘All Aboard ADHD’, where she talks about the issues affecting families of children with ADHD.

“It’s hard, because if you don’t get enough sleep then everything is impacted - your mood, your ability to focus and concentrate. All the things we know are very, very difficult with ADHD, suddenly with a lack of sleep those are compounded, and it’s much, much harder.

“I always think it’s a cruel twist of nature that this neurodiversity, which really needs sleep, almost prevents it in some ways or makes it much harder to come by.”

Professor Samuele Cortese, Professor of Child and Adolescent Psychiatry, is a co-lead of the Sleep Buddy study.

“Knowledge about how to effectively treat these problems is limited,” he says. “Children are often prescribed melatonin to regulate sleep patterns, but this does not work for everyone and does not always address the underlying causes.

“We are therefore looking at more comprehensive ways to address this problem by supporting parents in the management of their children’s sleep problems.”

Testing Sleep Buddy

Over the past two years, researchers have been working with parents and carers of children with ADHD to develop Sleep Buddy.

Professor Cathy Hill, Honorary Consultant in Paediatric Sleep Medicine, is a co-lead of the Sleep Buddy study.

“The Sleep Buddy website has been designed in a way that meets their needs, addresses their concerns and is practical to use,” she says. “It has advice for families on how to manage sleep problems, top tips from other parents, and will help parents to create a sleep plan for their child, all with the support and guidance of sleep experts and the research team.”

Families are now being invited to help researchers test to how well Sleep Buddy works in a large trial.

The study aims to recruit around 350 children aged 6-12 years with a diagnosis ADHD from across the UK. This will include children sometimes left out of research, such as those living with foster carers.

Families who take part will complete online questionnaires and have video calls with researchers. Children involved will also be asked to complete computer-based attention and memory tasks.

Researchers will follow up at three and six months. This will help them see if there are lasting improvements to the child’s sleep, behaviour and ability to concentrate.

They will also investigate the wider effects of better sleep on families. It might, for example, allow a parent to return to work.

Supporting families

Claire, who also found out she herself has ADHD following her son’s diagnosis, feels this could be a vital resource for families.

“It's a universal issue,” she says. “I don’t think I’ve ever met anybody where sleep hasn’t been an issue when you’ve got a child with ADHD. I think that parents don’t know what to do, and a dedicated platform that offers this help and support and guidance, specifically for children with ADHD, would be so powerful and so valuable.

“It's so important to have the perspective of parents in this, because we’re the ones living and breathing these challenges and we’re the ones that need the help. It’s how you bridge that gap between clinical evidence and creating a tool that’s actually useful and that is specific for ADHD.

“There may be a lot of amazing resources out there about how to help sleep, but if we’re not tailoring those to the needs of a neurodivergent brain, specifically ADHD, then we’re perhaps not putting supports and interventions in place that are going to be successful longer term.”

“We hope this new website can greatly improve the lives of children with ADHD and their families,” says Professor Hill.

“The Sleep Buddy study will give us evidence to know whether this digital tool can give families the support they need to help their children sleep better and reduce the harm that ADHD-related sleep problems can cause to children and their families.”

Engaging the ADHD community

As part of the wider study, the research team are also looking at ways to educate healthcare professionals about sleep problems experienced by children with ADHD.

They are creating an online screening tool and training programme. These support healthcare professionals diagnose sleep problems and identify the most effective way to treat them.

The team includes researchers in the Southampton Primary Care Research Centre with expertise in digital health interventions.

They are working closely with colleagues at King’s College London, Newcastle University, Nottingham Trent University, the University of Nottingham. They are also working with national ADHD and foster care charities.

If your child is aged 6-12 and has sleep problems and a diagnosis of ADHD, you can sign up here to take part in the Sleep Buddy trial.