Acquired brain injury in children and adolescents: Investigating assessment of communicative participation in daily life situations

Abstract: Aims The overall aim of this thesis was to explore assessments of communicative participation in children and adolescents (hereafter: adolescents) with acquired brain injuries, mainly through evaluations in the Communicative Effectiveness Index (CETI) and in interviews with the participants. The aim was also to capture important changes in communication over time. Five sub-studies were carried out, presented in Papers I-V. Methods Paper I: Pragmatic evaluations were explored in eight participants with severe brain injuries. The data were obtained in clinical surroundings by a speech language pathologist and rehabilitation assistants, using clinically applied pragmatic taxonomy, the Pragmatic Protocol (PP). Paper II: Descriptive and comparative methods were used to assess the communication outcome in an adolescent with ABI. The investigations included linguistic and cognitive test data and adolescent/parent evaluations of communication skills in the CETI, post-injury and at follow-up. Video recordings to explore communication management were analysed through self-evaluation and interview procedures. Paper III: The contribution of CETI in the assessment of ABI was examined through parent evaluations of communication in 30 adolescents, which were compared with linguistic, cognitive and brain injury data. Paper IV: Assessments of daily communication skills delivered by the parents of eight adolescents were compared with self-evaluations by the adolescents themselves. Interview data were analysed in particular by applying activity-based communication analysis, ACA (Allwood, 2013), and the theory of distributed cognition (Hutchins, 1995a). Paper V: Change scores in 30 adolescents between post-injury measurements and follow-up results were estimated. Results Paper I: Seven of eight participants with severe brain injuries were assessed as having a highly reduced capacity to communicate within all the assessed pragmatic parameters that involved speech and language skills. Paper II: Self-evaluation of the video recordings and analyses of communication management in Paper II confirmed impaired communication, related to language comprehension difficulties, high speech rate and the number of speakers involved. Paper III: The CETI data showed that adolescents with more communication difficulties, according to their parents, also obtained significantly lower scores in tests of grammar comprehension and verbal IQ. The trend was similar for word comprehension, naming and perceptual IQ, although this was not supported by significant results. However, complex communicative interactions, such as fast conversations with several speakers involved, were affected in all participants, including those with higher results in linguistic and cognitive tests. As a result, complex communicative situations appeared to be particularly vulnerable to the effects of the brain injuries, regardless of injury severity. The aetiologies of the injuries did not affect the outcome in individual results. However, the majority of adolescents with more communication difficulties according to parent evaluations had left-hemisphere brain lesions. Paper IV: Overall high agreement between the adolescent and parental assessments was found. However, complex communicative situations more frequently received lower scores in the parental ratings. Analyses using the ACA and distributed cognition models and interview data pointed to the usability of a systematic comparison of the shared views on communication after ABI in adolescence, to increase knowledge of the participation perspective in real-life communication. Paper V: The nature and extent of communication abilities after communication strategies applied by the parents at home showed a significant increase in ability in 30 participants (p < .01), but some tasks did not improve as much, even showing a reduction in capacity after the one-year application of communication strategies, according to parental estimations. Conclusions One general conclusion in this thesis is that evaluations of communication abilities in adolescents with ABI benefit from analyses of interaction in everyday situations. The data obtained in the clinical surroundings, in particular, the results from cognitive, linguistic and cerebral lesion site data, appear to have a certain predictive value in terms of the communication outcomes rated in the CETI, thereby strengthening the content validity of the CETI in adolescent participants with ABI. The findings further point to the important role parents play in exploring the adolescents’ communicative participation in real life by sharing their opinions in interviews, based on the CETI results. The participation perspective can be addressed in the self-assessments by the adolescents themselves, as was shown in analyses of video recordings and in the interviews exploring the activitybased communication analysis and distributed cognition perspectives. The mixed-method design applied in this thesis could provide information which could contribute to shaping fruitful individualised rehabilitation programmes in adolescents with ABI.