“My child is completely underestimated”: Canadian parents’ perspectives on implementing an accessible language comprehension assessment for non-speaking children with cerebral palsy

Reliable assessment of language comprehension is difficult for children with significant speech and motor limitations. The Computer-Based instrument for Low motor Language Testing (C-BiLLT) was designed for children with cerebral palsy (CP) and speech and motor limitations. A Canadian English version (C-BiLLT-CAN) has been validated. However, early investigation identified feasibility challenges necessitating further exploration. This study aimed to understand parents’ perceived barriers and facilitators to implementing the C-BiLLT-CAN in the Canadian clinical context.
Seven focus groups were conducted synchronously online with 16 parents from five Canadian provinces/territories. Transcripts were analyzed using semi-deductive thematic analysis, framing results within the Consolidated Framework for Implementation Research (CFIR).
Parents unanimously expressed interest in making the C-BiLLT-CAN clinically available. Facilitators and barriers were discussed under five themes. Key facilitators included the unique design, standardized nature, and potential flexibility of the C-BiLLT-CAN. Barriers involved the inability to accommodate all children, the potential for unintended assessment impacts, and clinics’ readiness and willingness to prioritize implementation.
This study contributes new knowledge surrounding the assessment needs of parents of children with CP and speech and motor limitations. Alongside findings from a parallel clinician study, results will inform adaptations to the C-BiLLT-CAN to facilitate implementation.
Parents showed interest in having the Canadian English Computer-Based Instrument for low-motor Language Testing (C-BiLLT-CAN) made available to their children
Facilitators included the unique, standard, and flexible design of the C-BiLLT-CAN
Barriers included doubts about accommodating all children and unintended impacts of assessment
Findings will inform an adapted C-BiLLT-CAN to facilitate implementation in Canada