Behaviour/exercise/sleep logs were completed by families; intake and exit interviews used emplotted narratives to investigate the history of behaviours; participants’ disruptive daytime behaviours were observed in the classroom. Disruptive daytime behaviours were grouped as: “challenging”, if there was an obvious explana­tory model; “goofy”, if behaviors had a light-hearted origin; or “unspecified”, if there was no explanatory model rather than experiencing own limitations or vulnerability. Physical exercise had a positive effect on sleep quality in all participants. All presented with difficulty breathing and insomnia patterns; the latter possibly having a familial origin in vast majority of the individuals. Conclusion: The application of emplotted narratives as a participatory research method aided the development of a framework, which exceeded traditional perspectives. Families and investigators developed a shared language regarding disruptive daytime behaviours, and potential factors affecting or triggering behaviours, which may need further investigations, e.g. via play-therapy and sleep assessments. Unexpectedly, we observed atypical insomnia patterns likely triggered by a familial condition.

Achievements: The study design mimics a typical pattern that many families of children with Down syndrome might experience in real life, including complaints of disruptive behaviours observed at school.  We developed a simple data-collection and visualization model, which can be applied by any professional, e.g. in the education system, and caregiver for collecting in-depth data.

Project Leads: Osman Ipsiroglu & Sylvia Stockler (BC Children’s Hospital, Vancouver, BC)

Project Partners: Susan Fawcett, Dawn McKenna & Pat Hanbury (Down Syndrome Research Foundation, Burnaby, BC)

Research Assistants: Mackenzie Campbell, Melvin Chan, Nadia Beyzaei  

Funding: (1) Summer Student Scholarship, BC Children’s Hospital Research Foundation 2016 & 2017: (2) BC Children's Hospital Foundation / Children Sleep Network (PI: Osman S. Ipsiroglu); (3) DSRF; (4) NeuroDevNet – Network of Centres of Excellence (NCE): Sleep Apps: Better Nights, Better Days, Less Medication (PI: Osman S. Ipsiroglu)

Acknowledgements: Parents and DSRF Summer School Team, Ms. Jillian Baldwin, Ms. Andrea Lee, Ms. Danielle McKinney, Ms. Amanda Szabo for their contributions to study protocol development, and Ms. Karen Derry (Sunny Hill Health Centre for Children, BC Children’s Hospital)