When Jasneek Chawla commenced her PhD evaluating the impact of sleep interventions on children with Down syndrome, she didn’t realise just how deeply many families of children with disability were struggling.
“Each time I did a clinic I could see families struggling. Struggling with all aspects of life. Time and time again these families were being told by health professionals to “just get on with it”.
“They didn’t feel they could ask for help.”
Studies show that children with Down syndrome are six times more likely to have sleep problems. And parents and siblings experience the ripple effects. According to Jasneek, significant inequity exists in the provision of sleep health care for these children, and little support for their families who experience the often debilitating effects of sleep deprivation alongside their child.
“While parents acknowledged that sleep disruption had adverse and pervasive impacts on their wellbeing and family dynamics, they accepted sleep difficulties as a regular part of raising any child, particularly one with a disability,” Jasneek explains.
When they did seek treatment, parents often reported receiving insensitive, and inadequate care.
“Healthcare professionals were often normalising children’s sleep difficulties. This was resulting in sub-optimal treatment. At times, they failed to refer families to sleep services.”
Some examples of insensitive guidance were extreme. “One family was told to talk to their child with dog commands.”
Five major themes quickly emerged from her research. “That childrens’ sleep issues are often very complex, made worse by things like pain, or seizures. That sleep disturbance affects the whole household, including siblings.”
The experiences of caregivers were brought to light. “Caregivers experience severe fatigue, too, which impacts their own health, thinking, and ability to work. We also know these parents and families are trying different strategies and treatments to improve sleep. And what’s missing is tailored information … better information and supportive resources.”
Jasneek said that stemming from this and other studies, an amazing community of supporters formed. “A community of people who were willing to help us to try and improve the lives of these children and families.”
A subsequent MMRFF grant study, ‘early sleep interventions to improve outcomes in children with neurodisability’ revealed that the challenges faced by families of children with Down syndrome were mirrored in the lives of families whose children were living with other types of disability. The aim of this large study of 300 caregivers of children with neurodisability was to understand how sleep problems affect families – beyond medical outcomes and into daily life, wellbeing and coping strategies – and improve outcomes for these children through sleep interventions.
Improving sleep diagnosis and treatment for children with neurodisability
In a second phase of her MRFF funded program, Jasneek focused on diagnostic testing for sleep disordered breathing. Children with conditions like Down syndrome, Prader Willi Syndrome and Cerebral palsy have a higher rate of sleep disordered breathing, or SDB, than typically developing children.
On average, this group of children will undergo 3-4 sleep studies across their childhood, sometimes even more. Recognising the difficulties of standard sleep study monitoring for children with neurodisability, Jasneek and her research team set out to evaluate alternatives.
“Standard in-lab polysomnography (PSG) testing equipment is often problematic. It includes a lot of wires and attachments to the child, which many children, particularly those with sensory sensitivities, won’t tolerate. Children also don’t sleep well when in the lab as a result and so you don’t get a good measure of what may be happening at home.”
Working with Professor Sullivan, the founder of CPAP, a new sleep-monitoring mat, the Sonomat contactless mat, better suited to the needs of children with neurodisability, was developed and tested with the goal of validating a more tolerable diagnostic method for sleep-disordered breathing in children with neurodisability.
“This new, non-invasive mat does away with wires and sensors, like nasal prongs and EEG leads, making it much more tolerable.”
The final phase of the research program involves a randomised controlled trial (RCT) of a range of tailored sleep interventions for children with neurodisability, focusing on behavioural sleep problems and trying to determine the best approach to management.
National guidelines
Today, there are no clinical guidelines to support the evaluation and management of sleep problems in children with disability in Australia, or elsewhere in the world. Jasneek hopes that this research will contribute towards the development of appropriate national guidelines to help health professionals such as GPs, general paediatricians and allied health professionals manage sleep issues for children living with neurodisability.
“If we can improve this for families, for caregivers, the difference it will make to their quality of life is significant.”
“We all need sleep. It’s an essential to our lives. When I see families in the clinics, parents tell me I’ve changed their lives by helping them get sleep. All I’ve really done is I’ve simply listened and helped them find ways to manage this themselves, with tailored support.”
Jasneek Chawla is a paediatric respiratory and sleep physician at the Queensland Children’s Hospital in Brisbane, Associate Professor at the University of Queensland and President of the Australasian Sleep Association.