Measuring Behaviours of Concern with the BoCAI
We are collaborating with neurodiverse youth, their caregivers, clinicians, physicians, and educators to develop the Behaviours of Concern Assessment Instrument (BoCAI).
We know that many children with NDDs have behaviours of concern (BoC), but we do not know who is impacted by these behaviours and how significantly. Without this knowledge, we cannot help this population to the best of our abilities.
Part of the reason why we have this knowledge gap is because we do not have a good way to measure BoC. Existing measurement instruments do not meet the current needs of the community as they include outdated language and behaviour classifications, exclude many behaviours which caregivers report as impactful, and do not have objective ways to measure how severe a behaviour is, impacting how they can track changes in behaviours. Therefore, in collaboration with diverse individuals with lived experiences, we have developed the Behaviours of Concern Assessment Instrument (BoCAI), an inclusive and comprehensive instrument to measure BoC in neurodiverse individuals.
To do this, we interviewed neurodiverse youth and their caregivers, physicians, clinicians, and educators to explore their thoughts and perspectives on the first draft of the BoCAI. Through these interviews we identified many strengths of the BoCAI and areas of improvement. We used this feedback to refine the instrument and create a new version of the BoCAI which meets the needs and preferences of end users. Next, we will pilot test the BoCAI under real-world conditions, test its feasibility, and then perform full psychometric validation of the BoCAI. The BoCAI will be a first step in increasing our understanding of the experiences of BoC in neurodiverse children and youth.
Collaborators:
The PN Lab Advisory Council
Dr. Deborah Dewey PhD RPsych, Professor, Pediatrics, U of C
Society for Autism Supports and Services (SASS), Calgary, Alberta
Blossom Group, Ontario