Encouraging the children to talk about their participatory experiences was challenging in a number of ways. Lack of motivation for the task did not appear to be an issue. The impact of the researcher was undoubtedly a factor, but other factors were also significant. As described
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in the previous chapter, all the interviews took place in the afternoons of school days. The researcher was aware of the implications of this – overwhelming fatigue experienced by most individuals with severe ABI can have considerable impact on cognition and behaviour. Unfortunately the overall logistics and participant-preferred locations and days for the interviews of everyone in the study made alternative arrangements for mitigating fatigue difficult. Two of the children appeared to be particularly tired after the end of their school day. As well as expressing themselves through mediated communication the child participants used a range of non-verbal cues such as facial expression, engagement, and body language. The researcher tried to be open and honest about not always understanding verbal responses, which especially occurred when interviewing Jack who has aphasia. Clarification was requested but there was reluctance to do this repeatedly for the same piece of information, to minimise ‘unsettling’ him. On these occasional instances, eye contact was made with the teaching assistant who had accompanied Jack. (She sat at a distance but within hearing, to minimise her presence in the interview. She had been described by the headteacher as better attuned than anyone else at school to interpreting Jack’s expressive utterances when they lacked clarity.)
As discussed in the literature review, there have been very few research studies that have incorporated the views of children with severe ABI, and yet the subjective experiences of children themselves are essential to understand their participation (Adolfsson, 2011). Including their voices in the study was considered particularly pertinent because the study aimed to understand their experiences of participation in their everyday settings. Communication difficulties were anticipated which is why a tool, Talking Mats, that obviated the need for verbal responses was selected. In this respect the choice of tool was a successful one – it helped to facilitate the child participants engagement, involvement, understanding, and independent control – they participated!
Following the interviews, the researcher considered a more detailed appreciation of communication and memory processes most commonly impaired following severe ABI – the processes for converting thought into language, and autobiographical memory (see below) – were essential prerequisites to discussion of the participants difficulties, and also for consideration of ways in which the voice of children with severe ABI may be more effectively elicited in future research studies. This necessitated further review of literature.
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Voice of the child participants: Cognitive overload ?
Seeking the views of the child participants on aspects of their everyday lives needs to be conceptualised as talking about relational meanings – the child’s relationship with the people and settings in their lives. Understanding thought processing in terms of relational meanings requires perspective taking and selective attention, both of which have been frequently and negatively implicated in research studies about ABI (Anderson et al., 2001). The constructional, cognitive effort to package thoughts into a ‘whole’ for coherent verbal expression (Happe, 1995), may help to explain the communication difficulties and the limited verbal contributions of the child participants. Their responses indicated the Talking Mats activity provided access to meanings related to the symbols on the digital cards, and they were able to carry out the tasks appropriately. Producing words that corresponded in a very direct manner to their referents, as is the case for concrete nouns, was relatively straightforward – hence, the participants engagement with the cards symbolic representations indicated understanding at a basic rather than a more abstract level (Chapman et al., 2004). For example, ‘My teacher is always nice to me. She gave me a massive packet of biscuits’. The use of more abstract language and verbs referring to participatory activity requires much more cognitive mediation (Marshall, 2009) and macro-level processing (Chapman et al., 2004) than participants were able to demonstrate. Problems with accessing language, and difficulty in converting perspective-taking into lexical concepts may have made it hard for them to frame ideas in ways which were language compatible. With reference to the theories of Dipper et al. (2005) and Chapman et al. (2004), they may not have had access to words and more complex meanings to anchor their thoughts, restricted by difficulties with macro-level processing. Encouraging verbal explanations for their choices may therefore have been, at times, tantamount to cognitive over-load; it was too complex a task for them, especially when tired.
Eliciting views of the study children’s experiences of their participation in school, home and community activities were also dependent on their ability to remember personally experienced past events. Autobiographical memories are stored as narratives involving episodic and semantic knowledge. They also require an awareness of the self as having experienced the event including the integration of perspective, interpretation, and evaluation (Fivush, 2011). Short and long-term memory difficulties resulting from ABI make it hard to
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maintain a coherent and continuous narrative of experience (Hall & Powell, 2011), so creating memory voids and the possibility of confabulation (Metcalf, Langdon & Coltheart, 2007).