Overview

Based on my interest in adherence research, socio-cultural aspects of medicine, child development and neurology (Ref# 1,2,3,4) I developed, in collaboration with medical anthropology and educational psychology, a comprehensive functional sleep/wake-behaviours assessment concept and began to transform physiological knowledge with questions of sleep health and management (Ref# 3,4,6,7).

In collaboration with the Cognitive Systems Lab at UBC, I have developed a 'Virtual-Sleep-Lab', where Videosomnography is used for screening ‘visible’ and ‘recognizable’ sleep disorders in children with neurodevelopmental disabilities/disorders in their natural setting, at home (Ref# 8,9,10). Based on this research, the Inter. RLS Consensus Group has included children with NDD in their recent Consensus Statement.

Research

NeuroDevNet "Better Days/Better Nights"
SWAPPs 4KIDS with NDDs. Structured functional Sleep/Wake Behaviour assessment in children with neurodevelopmental disabilities/disorders & monitoring therapeutic interventions.

Overview: Our team has developed a web app (sleep/wake behaviours App, SWAPP) to facilitate recognition, characterization and monitoring of sleep problems (SPs) and daytime sequelae in children and youth with neurodevelopmental disabilities (NDDs) [http://youtu.be/60Kx4jmU6Is]. The use of the SWAPP in clinical practice has created evidence for revisiting clinical practice guidelines and improving existing policies by highlighting the fundamental need, to recognize and appropriately treat sleep problems in most vulnerable populations. We collaborate with a network of multidisciplinary stakeholders, including non-governmental organizations (representing patients) and recently with decision makers to ensure rapid and sustainable implementation and policy change.

Objectives of our research: Further development of the SWAPP and associated database. We are particularly interested in medication strategies, captured by the medication module for monitoring psychotropic drug prescriptions and behavioural / neurologic adverse drug reactions. A free downloadable smart-phone version of our SWAPP for caregivers and practitioners to (self-)assess / recognize the concept of challenging sleep / wake behaviours will be ready around fall 2015.

Significance: At the end of the project we will have a series of validated and commercially available SWAPPs with patient driven self-assessment modules for participatory data collection on poorly understood challenging-disruptive sleep/wake behaviours. Patient and community tier input during all stages of development will result in effective implementation of the SWAPPs through knowledge translation activities in collaboration with non-governmental organizations.

Grants

2009-2012

Canadian Institute of Health Research. Night waking reduction in Canadian infants

a randomized clinical trial of a parent based cognitive and behavioural intervention in community health units. (Co-PI, PI

Dr. Wendy Hall)

2013/2014

Peter Wall Institute for Advanced Studies

Visiting Scholar Funding for Dr. Karen Spruyt, Vrije Universiteit, Brussels (together with Dr. Sylvia Stockler)

2012

Peter Wall Institute for Advanced Studies

Phenotyping Sleep Behaviours Lessons from the Past, Directions for the Future (together with Dr. Bruce Carleton)

Honours & Awards

2011

Excellence in Education Award, Learning & Development BC Children's hospital & BC Women's Hospital & Health Care

2008

Transcultural Paediatrics Award, German Society for Socialpaediatrics & Adolescent Medicine and Austrian Society of Paediatrics

Research Group Members

Sera Bao, Undergrad Research Assistant
Nadia Beyzaei, Senior Research Assistant
Renee Boldut, Undergraduate Student, Research Assistant
Bu Bu, Undergraduate Student
Melvin Chan, Research Assistant
Linus Hung, Software Engineer
Ruth Liu, Undergraduate Student
Emmanuel Tse, Undergrad Research Assistant
Mikayla Wohlleben
Kevin Xiao, Undergrad Research Assistant
Ted Zhou, Volunteer