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. 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.

Poor sleep exacerbates existing learning and behavioural difficulties in children 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 ND 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. 

Phase 1: Understanding Parental Perceptions and current strategies to treat sleep problems

Aims of study
  1. To estimate the prevalence of sleep problems in children with ND in the community
  2. To identify sleep priorities of the families of children with ND
  3. To understand the current management received by children with ND for sleep problems
  4. To compare the prevalence of sleep problems in children with ND in the community and those referred to the Sleep Clinic at the Queensland Children’s Hospital,The Children’s Hospital at Westmead and  The Royal Children’s Hospital, Melbourne.

Study design

Large Cross-Sectional Survey involving families of children with neurodisability in the community and hospital settings.  

View the study poster (PDF, 1.4 MB)