Understanding the assessment of language comprehension in children with severe motor and speech impairments due to cerebral palsy

Abstract

Children with cerebral palsy (CP) and severe motor and speech impairments face problems in communication. Their capacities may vary across all domains of functioning, including mobility, selfcare and communication, which means these should be assessed independently, using valid and reliable instruments. The assessment of an unobservable construct like language comprehension skills is complicated because the completion of commonly available tests requires speech and motor skills. Using such tests with children with severe motor and speech impairments does not yield a valid, reliable, or representative result. To fill the gap in language assessment instruments, the Computer-Based instrument for Low motor Language Testing (C-BiLLT) was developed in the Netherlands between 2009 and 2014, and introduced intro clinical care in 2015. This test provides an accessible alternative to traditional language tests, allowing participation of children who cannot speak, finger point, or manipulate small objects. The overarching goal of the work in this thesis was to bring the C-BiLLT to Canada and to improve our understanding of the use of the C-BiLLT from a clinician and family perspective. To achieve this goal, the research described in this dissertation addressed objectives related to: 1) the cultural and linguistic adaptation of the test; 2) the psychometric properties of the new version; 3) the implementation of the test; and 4) the concept of family-centred care in relation to the C-BiLLT assessment. Three empirical studies were completed. The adaptation processes (including a validation study) that resulted in the Canadian English version of the C-BiLLT (C-BiLLT CAN) are described in Chapters 2 and 3. To understand the unique implementation attributes of the C-BiLLT, Chapter 5 describes a survey among users about their C-BiLLT use, and Chapter 6 describes an interview study in which clinician behaviours are explored into more detail. Finally, Chapter 7 describes the protocol for a qualitative study using interpretive description to understand parents’ experiences of the C-BiLLT assessment for their child with cerebral palsy and severe motor and speech impairments. The process to develop the C-BiLLT CAN comprised many phases, to ensure the linguistic and conceptual equivalence between the original C-BiLLT and the newly developed version. The benefits of a thorough cross-cultural adaptation process were confirmed by the results of the validity and reliability assessment of the C-BiLLT CAN in typically developing Canadian children. While future research is needed to confirm the feasibility and validity of the test for Canadian children with CP, our study showed that the new version is a robust instrument to assess spoken language comprehension and is available for use in clinical practice.

The C-BiLLT CAN is a scientific innovation. How scientific innovations can be best implemented into clinical practice is studied by implementation science. An implementation science lens was applied to the current use of the C-BiLLT in three countries where the test is currently available in clinical practice: The Netherlands, Belgium, and Norway. The survey study described in Chapter 5 demonstrated that clinicians use the test with children with CP (the C-BiLLT’s target population), but also with children who have other diagnoses, including Down’s syndrome and autism spectrum disorder. This study also reported on the barriers and facilitators related to use of the C-BiLLT. We categorized the reported barriers and facilitators into four groups: 1) factors inherent to the C-BiLLT (i.e., its hardware, software, and content); 2) factors related to the child; 3) factors related to the clinician; and 4) factors related to the environment. To gain a better understanding of clinicians’ implementation behaviour and what is needed to facilitate behaviour change, fifteen survey respondents were interviewed individually. The COM-B model (Capability, Opportunity, Motivation – Behaviour) of behaviour change was the theoretical foundation for this study. This model describes how capability, opportunity, and motivation play a role in people’s behaviour. This study taught us how these components of behaviour interacted for clinicians who use, or attempt to use the C-BiLLT in clinical practice. The study highlights the need for support for the clinicians who use the C-BiLLT with children with severe motor and speech impairments. Compared to clinicians who use it with children with other disabilities, this group of clinicians faces more and more complex barriers. The studies described in Chapters 5 and 6 underline the importance of appropriately addressing barriers to C-BiLLT use. The growing emphasis on family-centred care in pediatric rehabilitation services inspired the conceptualization of the concluding study of this thesis, of which the protocol is described in Chapter 7. The aim of the described study is to advance Speech-Language Pathology (SLP) disciplinary knowledge around family-centred assessment for children with CP and severe motor and speech impairments. The protocol describes how we would like to address this aim by collecting parent experiences of their child’s C-BiLLT assessment. This thesis approached the C-BiLLT from the angles of cross-cultural adaptation, psychometrics, implementation, and family-centred care. The development of the C-BiLLT CAN provides the foundation for standardized and accessible assessment of spoken language comprehension for children with CP in Canada. Theory-informed knowledge translation strategies are suggested that align with real-world practice. Finally, suggestions for incorporating parents’ perspectives into the assessment process help to increase the value of the assessment for children, their families, and clinicians alike.