Child participant Interviews

Eliciting the views of children with severe ABI as part of a research study can be challenging because of the complex mix of cognitive, physical and communication difficulties. However, adult proxy views can differ significantly from children’s own views, and so having the child’s (insider) perspective as well as the child (outsider’s) perspective (Sommer et al., 2010) is integral to the current study.

3.6.1. Considerations and methods

There are various models representing the extent to which children make a contribution to projects. Shier’s (2001) model is based on 5 levels of engagement ranging from being listened to, to children sharing power and responsibility for making decisions. The researcher was not seeking to position herself at any of the levels but used the framework as a general guide to help with the process of reflexivity in terms of decision-making about effective ways and tools for communicating with children who may have significant cognitive and communication difficulties, and ensure their optimum participation.

Although face-to-face traditional interview techniques are useful for gaining the perceptions of adult participants, this approach was not considered a viable or appealing approach for children with significant cognitive and communication difficulties. It is important to use methods which are sensitive to children’s particular abilities or interests (Punch, 2002). Features thought to be more likely to make the child participants feel at ease with an adult researcher included those that obviated the need for verbal responses and eye contact, were motivating, and provided choice and control.

3.6.2. Use of Visual methods

Language continues to be the central form of data production and for communicating findings in qualitative research. Mason (2002) refers to the ‘extraordinary’ dominance of talk and text in our research imagination and methods:

‘extraordinary, because of the one-dimensional nature of this foray into, or construction of, what most would agree is a multi-dimensional, multi-sensory ‘reality’. The idea that everything we are interested in exists in language or text, or is expressible in those ways, and

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that we can explore it using words or reading text, can be argued to be a rather limited and uncreative one’ (Mason, 2002, p.104)

There is now an increasing use of visual methods for research purposes (Flick, 2006) which have been described as ‘formidable sources of information’ (Denham & Onwuegbuzie, 2013, p. 670). Visual material can provide the ability to evoke embodied experience and therefore open up opportunities for verbal conversations that otherwise may not be generated. Visual methods of data collection and reporting may also be useful for working with research participants for whom language may create barriers rather than bridges. ‘Visual methods take seriously the role of images for academic research, challenging traditional preoccupations with data in the form of numbers and words. Visual methods can be a creative and highly informative way of generating interactions with research participants’. (Dunlop, undated).

3.6.3. Tools for eliciting the child’s voice

Several different visually-mediated methods for gaining the views of children have been developed such as the use of drawings, artefacts or taking photographs (Clark & Moss, 2001; Punch, 2002; Thomson & Gunter, 2006) to stimulate conversation, to be used as stand-alone data, or to provide the main means of presenting research findings accompanied by minimal words (Hearn & Thomson, 2014). A computer assisted approach for interviewing children was selected for the purposes of the current study. Computers are an enjoyable, and quickly engaging medium for children of all ages with or without additional needs, that can facilitate attention and communication in a familiar way (Berger, 2006; Barrow & Hannah, 2012). Augmentative and alternative communication (AAC) aids were considered. A task and symbol based tool (Proloquo2go) provides a voice for non-verbal communicators, has a large picture vocabulary and text-to-speech feature. It is customisable and thematic templates can be created. It was discounted because of its focus on text-to-speech voice and the type of symbols used which may have been perceived as patronising by the study participants who were attending mainstream school and were able to use spoken language to provide a basic level of communication. A computer-assisted interview tool using images, sound, speech and video, ‘In My Shoes’ (Calam, Cox, Glasgow, Jimmieson & Groth-Larsen, 2000) encourages reflection about experiences through dialogue, and was a potentially useful tool. This was

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discounted on the grounds of the protracted time and stages required to carry out the computer-assisted interviews with children who may have excessive fatigue and attention difficulties, and nor did it provide as much ease of use, and control for the child as Digital Talking Mats.

3.6.4. Digital Talking Mats

‘Talking Mats’ was selected for use with the child participants. This is an established and interactive communication resource that uses a visual framework. Picture symbols, devised with reference to the concepts underpinning the ICF/CY, were used as a basis for communication (Murphy, 1998; Mackay & Murphy, 2012). Talking Mats is so named because the original version consists of using symbols on small cards which are manually positioned on a textured mat.

The digital version of Talking Mats, loaded onto a tablet computer (ipad), was selected as meeting all the researcher’s identified criteria (spoken language not essential, minimal fine motor control required, child-friendly, no expectation of eye contact or face-to-face interaction with the researcher) so possibly making it easier for the child to relax and communicate.

The core principles for use of Talking Mats include the Interviewer asking open questions, being neutral, and matching conversation to the interviewee’s level of understanding. Talking Mats can replace the spoken word but can also augment existing communication skills. A level of comprehension of at least two information carrying words is required (Murphy, Cameron,

Markova & Watson, 2004).

Picture Symbols: ‘Topic’, ‘Top-scale’ and ‘Options’

Three sets of picture symbols are used – ‘Topic’, ‘Top-Scale’ and ‘Options’ together with the digital screen on which to display them. The associated concept for each symbol is also in written form.

Topic: The topic entitled ‘My wider World’ was selected by the researcher for the current

study as best reflecting aspects of childrens’ home, school and community life, and the ICF/CY Activities and Participation domain.

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Top Scale: This enables participants to indicate their views about the selected options and

topic. ‘Like’, ‘Dislike’ and ‘Unsure’ were used in the study.

Options: These are related to the chosen topic. Digital symbols representing a wide range of

options relating to the topic such as school, teachers, learning assistant, communication support, neighbourhood, being accepted, places to go, where you live, are able to be dragged onto the screen by the child one at a time and the child, in his/her own time, then places the symbol under one of the three top-scale symbols to indicate how they feel about each topic, or into a digital ‘trash bin’ if they don’t want to use a particular topic. The primary school version which has 16 symbols and the secondary school version which has 18 symbols were used for the relevant age/stage of the child participants. Most of the topics in the two versions are the same but differences reflect changes in development, language and levels of independence. For example, the secondary school version includes the topics ‘Future planning’ and ‘Neighbourhood’. The primary school version includes ‘visitors to my house’ and ‘where you live’. Blank ‘cards’ are available for including additional options or comments by the researcher or the participant.

Talking Mats provide a visual scaffold to conversation that enables children to think about their views and to see the content of the interview. The symbols act as a support ‘hook’ on which to ‘hang’ meaning. The images help to make abstract ideas more concrete, and reduce the demand on the user to remember the question and to find the vocabulary needed to answer which makes it easier to focus on processing information and to respond. The framework can help divide information into smaller more manageable parts and the act of moving the symbols can help to organise thoughts in a logical way (Talking Mats, 2018).

Taking charge of the tablet gives participants control of the communication process which helps to reduce the power differential between researcher and participant. The child decides on the choice of symbols, where they are placed, and the pace of the process which removes any need to respond “relatively quickly in a correct manner” (Punch, 2002, p.335). It also enables turn-taking in conversation.

Digital Talking Mats produces an instant visual report/recording of the session as created by the child, and as provided in the next chapter.

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