Grant: Doctoral Award - Frederick Banting and Charles Best Canada Graduate Scholarships

Context: A significant proportion of people with Down syndrome (DS) have behavioural health challenges severe enough that a secondary diagnosis, such as autism, is given. Further, these behaviour problems are detrimental to child and family mental health, and quality of life. Family-centered positive behaviour support (FC-PBS) is an evidence-based, intensive, individualized approach to addressing problem behaviour in children with neurodevelopmental disabilities. Within a three-tiered, public health approach to service delivery, a universal approach to FC-PBS needs to be developed. Research question: The proposed study will examine the effects of a group-delivered, and therefore cost-effective, FC-PBS program to parents of children with DS and behaviour problems on child behaviour, parental stress, and family quality of life. Method: A randomized, control trial will be conducted with 30 families, with 15 families comprising the intervention group and the other 15 making up a waitlist control group. The 12-week program will focus on teaching universal PBS strategies within a framework of empirically supported mindfulness and optimism training. PBS elements will include proactive strategies to prevent problem behaviour, as well as how to teach and reinforce desired behaviour. Families will be assessed before, during, and at several time points after treatment on measures of child behaviour, stress, and quality of life. Significance: Providing this treatment to families of young children with DS within a public health service delivery model may prevent the development of more severe problem behaviour that requires costly, individualized treatment. If found to be effective, the program could be delivered across Canada to help minimize the behavioural difficulties of children with DS from an early age. This would lessen the need for full-time support in school, and allow them to be fully contributing members of home, school and community life.