Early Sleep Interventions for children with neurodisability
Early Sleep Interventions to Improve Outcomes in Children with Neurodisability
Children with neurodisability form the largest group of children with developmental delay but remain an understudied population. Sleep disorders affect up to 80% of children with neurodisability (ND). They can occur at any age, are more severe and pervasive than in typically developing children and are associated with negative impacts on health and well-being of both the child and family.dren with neurodisability, who are likely to be more vulnerable to the effects of sleep disruption as a result of a longer period of critical development and the presence of comorbid conditions. Challenging behaviours, anxiety and mood are all worsened by sleep disorders in children with disability.
Studies have also shown that a high proportion of caregivers to children with neurodisability consider themselves to be sleep deficient. Sleep is therefore an important modifiable mediator of daytime function and family outcomes in this population and may also decrease health care utilisation.
At present, diagnostic options, particularly for sleep disordered breathing, are sub-optimal for this group, often exacerbating anxiety and distress for the family with the need to attend for in laboratory sleep studies that involve extensive monitoring. Management strategies are extrapolated from those used in typically developing children and do not necessarily address issues specific to children with disability, such as behavioural issues, pain or medication effect on sleep.
The objective of this research is to improve the diagnosis and management of sleep difficulties in children with ND, aiming to improve quality of life and outcomes for them and their families and in turn deliver cost savings for health services. Findings from this research will be translated to develop clinically relevant National standards of care for the diagnosis and management of sleep problems in children with neurodisability across Australia.
AIM 1: Understanding Parental Perceptions and Current Community Management Strategies for Sleep Problems in Children with Neurodevelopmental Disorders.
AIM 2 : Evaluation of a novel sleep mat, The Sonomat for diagnosis of sleep disordered breathing in children with neurodisability
This evaluation of a novel sleep mat, the Sonomat for diagnosis of sleep disordered breathing in children with neurodisability will finish recruitment at the end of 2025 with a target of 200 participants at completion. This is a non-invasive device that is being tested for diagnostic accuracy compared to gold standard polysomnography (sleep study) and patient acceptability across three tertiary clinical sites.
AIM 3: A RCT to Evaluate the Effect of a Tailored Behavioural Sleep Intervention Program for Non- Respiratory Sleep Problems in Children with Neurodisability Compared to Routine Care
This is a randomised controlled clinical trial comparing a structured, tailored behavioural sleep intervention program for children with neurodisability, delivered by two different methods. The methods will be compared to usual care within a tertiary sleep setting via group telehealth and an online e-advice program.
- The group telehealth will include 2 sessions, facilitated by psychologists specialising in paediatric sleep. Sessions will include sleep foundations, building an appropriate routine and specific considerations for children with ND. The intervention provides behaviour strategies for several sleep problems including needing a parent to sleep, sleep refusal, sleep anxiety, restlessness, delayed sleep onset, night wakings, night terrors and nightmares. Information on medical considerations, environmental and differences in processing and learning within children with ND are discussed.
- The e-advice program will have an avatar provide sleep advice. The content of this advice will be the same as the group telehealth and will address the same sleep problems, learning differences and sleep foundations.
Both programs will be compared to clinical care as usual. This study will include children with neurodisability aged 2- 18 years with three age modules developed to further tailor advice. Recruitment will occur within sleep clinics at three clinical sites. Recruitment for an initial pilot trial on the telehealth group sessions are being completed currently with an envisioned start for the main clinical trial in December 2025.
View the study flyer here (PDF, 263.7 KB).