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

Abstract

Purpose: 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.

Materials and methods: 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).

Results: 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.

Conclusions: 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.