Project Description
Challenge
Up to 90% of children with neurodevelopmental disorders (NDDs) experience sleep problems, particularly insomnia, which refers to difficulty falling asleep, staying asleep, and waking up in the morning. This number is in stark contrast to the 25% of typically developing children who have trouble sleeping. Poor sleep can lead to significant consequences for children’s health and well-being. It can also have a negative impact on family members.
Project Summary
To address this, KBHN researchers developed an online intervention for parents and primary caregivers to help children sleep better. This intervention, called Better Nights, Better Days for Children with NDDs (BNBD-NDD), is a multi-component, internet-based eHealth program designed for parents of children with Attention-Deficit-Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), Cerebral Palsy (CP), or Fetal Alcohol Spectrum Disorder (FASD). The program contains five sections (introduction, healthy sleep practices, settling to sleep, going back to sleep, and looking ahead). Psychoeducation and behavioural strategies are introduced through video and text, supported by graphics. Caregivers are empowered to implement the strategy independently and have access to built-in, evidence-based tools such as sleep diaries, personalized goal setting and tracking, and tailored feedback on individual progress.
Treating sleep problems in children with NDDs is critical. Yet, these children rarely receive the intervention needed. This problem is due to barriers such as limited intervention programs, insufficient training of healthcare providers in sleep problems in children with NDDs, and also logistic barriers for families to engage in traditional face-to-face interventions. For example, parents have to take time off work, travelling to appointments, competing demands of other treatments for their child). Because BNBD-NDD is delivered via the internet, parents can access this when and where they want, leading to greater accessibility. Research has demonstrated that well-rested children with NDDs have a higher quality of life, have fewer social and fewer emotional and behaviour problems.
Result
The goal of this research project is to test the effectiveness of the BNBD-NDD program. The research team is currently recruiting families from across Canada who have children with an NDD (ADHD, ASD, FASD, or CP) between the ages of 4 and 12 years to be part of a study. The aim is to determine whether the program improves children’s sleep and whether it’s associated with improved psychosocial outcomes for both children and parents. The ultimate goal is that BNBD-NDD becomes accessible online for any family who needs it.
Funding
This project was part of the larger “Sleep Program.” The program was funded a total of $989,901 by the Kids Brain Health Network and $1,419,600 by participating partners.
Team
Principal Investigators
Dr. Penny Corkum, Dalhousie University & IWK Health Centre
Dr. Shelly Weiss, University of Toronto & The Hospital for Sick Children
Co-Investigators
Dr. Cary Brown, University of Alberta
Dr. Evelyn Constnatin, McGill University
Dr. Roger Godbout, University of Montreal
Dr. Ana Halon-Dearman, University of Manitoba
Dr. Osman Ipsiroglu, University of British Columbia
Dr. Paul Pavlidis, University of British Columbia
Dr. Graham Reid, Western University
Dr. Sarah Shea, Dalhousie University
Dr. Isabel Smith, Dalhousie University
Dr. Machiel Van der Loos, University of British Columbia
Partners
Dalhousie University – Industry Liaison and Innovation
Velsoft
Autism Canada
CADDRA
The Canadian Cerebral Palsy Registry
Canadian Sleep & Circadian Network
Canadian Sleep Society
CanChild
CP Association of Manitoba
CanFASD
Childhood CP Integrated Neuroscience Discovery Network
Province of Ontario Neurodevelopmental Disorders Research Network
