Co-designing Nova Sleepcare: exploring in-clinic, physician-delivered sleep education

Youth with neurodevelopmental disorders (NDD) frequently experience behaviors of concern (BoC), such as aggression or self-injury, often exacerbated by sleep disturbances. Sleep education can improve sleep in pediatric populations, but existing interventions rarely fit into routine clinical care for families managing these behaviors. As such, effective programs often fail to reach those who need them the most.

To co-design Nova Sleepcare, an in-clinic, physician-delivered sleep education program, by identifying barriers and facilitators to its use among end-users (youth with NDDs, caregivers, and pediatricians).

A prototype of Nova Sleepcare, based on clinical guidelines and evidence-based behavioral strategies, was iteratively refined through open-ended interviews with 24 end-users (8 youth, 9 caregivers, 7 pediatricians). Interviews were transcribed verbatim and analyzed using reflexive thematic analysis to identify barriers, facilitators, and modifications needed to optimize Nova Sleepcare for real-world practice.

Analysis identified one barrier and three key facilitators that shaped the final intervention. The barrier reflected end-users' limited capacity to deliver or implement sleep strategies. Facilitators included: (1) strong motivation among youth and caregivers to improve sleep and reduce BoC; (2) Nova Sleepcare's accessibility and ability to be tailored across diverse presentations and settings; and (3) its stepwise Pathway to Better Sleep, helping families and pediatricians collaboratively prioritize manageable strategies. These findings informed a streamlined, flexible tool that end-users viewed as practical and relevant.

By embedding co-designed, evidence-based, active sleep education into the clinical encounter, Nova Sleepcare addresses a longstanding gap in care for youth with NDDs with BoC.