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 Existing measurement instruments do not meet the current needs of the community as they include outdated language and behaviour classifications, exclude many behaviours which caregivers report as impactful, and do not have objective ways to measure how severe a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 are developing the Behaviours of Concern Assessment Instrument (BoCAI), an inclusive and comprehensive instrument to measure BoC in neurodiverse individuals.

To do this, we first developed a draft BoCAI based on a review of existing instruments, behavioural data from a retrospective chart review, and clinical experience. We then interviewed neurodiverse youth and their caregivers, physicians, clinicians, and educators to explore their thoughts and perspectives on the draft 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. We then conducted a small pilot to identify and address any barriers to the clinical workflow of the BoCAI. Now, we are conducting a field test and usability study to evaluate the preliminary psychometric properties of the BoCAI and how usable, acceptable, and feasible caregivers find it.

We are currently looking for caregivers to participate in the field test and usability study of the BoCAI. More information can be found here.

For more information about the Behaviours of Concern Assessment Instrument, please email Maggie Ryan, Research Coordinator; Margaret.ryan@ucalgary.ca

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

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