Pepper, Lucy; (2020) Assessing pre-linguistic communication in young people with profound intellectual and multiple disabilities (PIMD). Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Children with Profound Intellectual and Multiple Disabilities (PIMD) experience profound impairments in communication, remaining pre-linguistic communicators across their lifespan. Whilst the majority will receive speech and language therapy (SLT) input, shortcomings in current approaches to SLT assessment for this group have been identified by existing research and were further explored through a survey study carried out for this thesis. These included a lack of agreement around which prelinguistic skills might be significant and a reliance on indirect methods of information gathering. In response to these issues, this thesis explored the use of structured sampling techniques to measure behaviours relating to joint attention (JA) in children with PIMD and addressed the following questions. 1) What patterns of JA behaviour are demonstrated by young people with PIMD? 2) Are these patterns of behaviour affected by the ability to fix and shift gaze? 3) Are structured probes an effective means of eliciting information about JA behaviours? A continuum of behaviours underpinning JA was derived from the developmental literature. Structured probes were devised to elicit these behaviours and were administered to seventeen participants with PIMD aged 4-16 on three separate occasions. Since target behaviours involved gaze fixation and gaze shifting between objects and people, a novel measure of these functional vision skills was also administered. Performance on the probes was compared to performance in less structured settings. Results indicated that young people with PIMD can be differentiated by the profiles of JA behaviours they demonstrate. These profiles were significantly correlated with their functional vision abilities but were not associatednot associated with background measures of cognitive and motor skills or with scores on the Communication Matrix (Rowland, 2004). Structured probes were an effective means of assessing JA behaviours, providing a controlled environment and multiple opportunities for participants to demonstrate capacity which was not always revealed by alternative means of information gathering. Findings of this thesis suggest that current approaches to communication assessment for people with PIMD might be enhanced by the increased use of structured sampling and a shared focus on behaviours relating to joint attention.

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