Mission: Kids Sleep Research aims to improve the health and wellbeing of children by targeting sleep to improve long-term functional outcomes.
Overview
Kids Sleep Research has an established research presence within Australia, participating in several multi-centre clinical trials, publishing widely in peer-reviewed journals and successfully receiving grants from different sources including National Health and Medical Research Council (NHMRC), The Medicine Research Future Fund Scheme (MRFF) and the Australian Research Council (ARC).
Contact
Email: kidssleep@uq.edu.au
Phone: (07) 3069 7503
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
- To estimate the prevalence of sleep problems in children with ND in the community
- To identify sleep priorities of the families of children with ND
- To understand the current management received by children with ND for sleep problems
- 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.
Welcome to Families in Focus
As part of Children’s Week, Children’s Health Queensland is hosting a unique research event on Monday 23 and 24 October 2023 in the performance space on level 2 at Queensland Children’s Hospital (near the food court).
This event will include six fun and interactive activities for the whole family, and will give children, parents, and caregivers the opportunity to share experiences and perspectives on caring for children with a disability.
We understand that not all families will have time to visit, and some may not be able to easily get to QCH. We STILL want to hear YOUR voice. So if you can’t make it to the Children’s Hospital on the 23rd and 24th of October, you can still have your say!
All the activities happening at QCH have been adapted to be available to complete online – simply click the link below to get started.
Online instructions
The link will take you to an information sheet and consent form. Once completed, you’ll be directed to an online survey to complete each activity.
Some activities are for parents, and some are for kids to complete. Participation in each activity is optional and can be skipped. Enter as much or as little information as you’d like, anything you write is helpful to us!
Some activities require uploading a drawing or voice recording. Specific instructions will be given at these points.
You can return to these activities to complete them at any time from the device you are using now.
If you have any feedback or questions, please get in touch via email to kidssleep@uq.edu.au.
This event is open to anyone who wishes to take part (voluntary) - you can do one or all the activities - whatever feels right for you.
This research event has been developed through a collaboration between clinicians at Children’s Health Queensland and researchers at the Child Health Research Centre and the Queensland Brain Institute, University of Queensland.
We acknowledge the support of our funding body the Life Course Centre for Research Excellence and our partners Children’s Health Queensland, The Children’s Hospital Foundation, Down syndrome Queensland and ARACY.
Local
Queensland Brain Institute - The University of Queensland
Professor Karen Thorpe
Australian Research Council Laureate Professor
Group Leader in Child Development, Education and Care
Dr Sally Staton
Senior Research Fellow
Discovery Early Career Researcher 2022
Dr Laetitia Coles
Postdoctoral Research Fellow
The Institute of Social Sciences Research - The University of Queensland
Professor Simon Smith
Professorial Research Fellow
Group Leader Sleep and Health
The School of Information Technology & Electrical Engineering – The University of Queensland
Associate Professor Philip Terrill
Biomedical Engineer
School of Education - The University of Queensland
Associate Professor Rhonda Faragher
Director of the Down syndrome Research Program(DSRP)
Associate Professor, inclusive education
QIMR Berghofer Medical Research Institute
Dr Kartik Iyer
Biomedical Engineer
Research Officer
Faculty of Society & Design - Bond University
Associate Professor James Birt
Film, Screen and Creative Media
Associate Dean, External Engagement
Assistant Professor Oliver Baumann
Psychologist
Faculty of Health Sciences & Medicine
Associate Professor Suzanne Gough
Physiotherapist
Associate Dean, Learning & Teaching
Mr Adrian Goldsworthy
PhD Candidate
Sessional Teaching Fellow
Interstate
Conjoint Professor Karen Waters, Children’s Hospital at Westmead SCHN, The University of Sydney
Dr Natalie Pride, Children’s Hospital at Westmead SCHN, The University of Sydney
Dr Maree Milross, The University of Sydney
Dr Moya Vandeleur, The Royal Children’s Hospital, Melbourne, Murdoch Children’s Research Institute
Professor Deborah Richards, Macquarie University
Community partners
Industry partners
- Sonomedical
- Fisher and Paykel