5. Research methods for children with disability
Whilst the focus of this report is on research strategies utilised with children with disabilities, there are many approaches adopted widely with all children that remain relevant. These include play-based methods (for example dressing up and role-play) to gain their views along with story telling and the use of puppets (Kellett, 2011). The Mosaic approach which allows children to draw from different tools and learning styles in order to bring across their perspective, recognizes the many different ways that children communicate (Pascal & Bertram, 2009). Tools identified by Pascal and Bertram in their Children Crossing Borders project included bookmaking, maps, tours, story telling, wishing trees, photography and film making, listening posts and cultural circles. Other researchers have identified particular strengths in artistic methods that include visual art, performance, narrative, music and poetry as they “have resonance with children’s lives and day-to-day activities” (Carter & Ford, 2013, p.96), noting that these can lessen the intensity of the interview process. With older children individual interviews (structured, unstructured and semi-structured) and focus groups become more acceptable (Kellett, 2011). To foster a participative approach and encourage dialogue with children, Pascal and Bertram used videotapes within focus groups. As noted earlier, children are not a homogenous group and the arts based approach along with the mosaic approach can provide several different activities through which children can utilise their different abilities and communicate their views.
Whilst there is a significant body of research demonstrating the usefulness of a range of modalities for researching with non-disabled children, it is less common to see children with disabilities involved in research. Young children with disabilities, in particular, have been underrepresented in research. Thus, their voices often become obscured and superseded by the voices of the adults in their lives (Underwood, Chan, Koller, & Valeo, 2015). Children with disabilities might require specific communication and access aids in order for them to participate effectively. Adaptable methods that can be adjusted for particular individual needs are important for involving children with many different kinds of disability. Inclusion of children with severe communication or cognitive impairments often does not occur because specific efforts must be made to involve this group in research projects (Morris, 2003). Despite assumptions about children with disabilities’ inability to participate in research and communicate their opinions a whole body of research suggests otherwise and reveals many communication strengths of this group and a willingness to be included in decisions that affect them. There are two important aspects to maintain if this group is to be effectively included in the research process (Rabiee, Sloper, & Beresford, 2005). The first is recognizing that “communication is a two way process” (p.386) and this means rather than forcing adult forms of communication that require speech onto children with disabilities we must learn how they communicate and reveal their opinions and views. The second aspect is creating methods of communication, which can amplify children with disabilities’ personal forms of communication and thus allow them to express themselves.
There have been some attempts to draw together what is known about children with disabilities’ inclusion in research and the strategies used to elicit their views and perspectives. In one systematic review of 22 research papers, methods included drawing, photography, talking mats, cue cards, pictures and tape recordings (Bailey, Boddy, Briscoe, & Morris, 2015). These methods can be used to include children with disabilities that require non-verbal forms of communication. A report that drew on the themes from five seminars in the United Kingdom identified additional strategies (Carpenter & McConkey, 2012), including large-scale questionnaire surveys (although these assume the child can express their views in writing which is not always the case for children with disabilities) through to a conversational analysis to examine interactions between two “non-speaking” young boys.
Tisdall (2012) reveals how problematic it can be to focus on “voice” over other forms of communication as this can silence children with disabilities who do not use speech as their primary form of communication, suggesting other forms of communication such as photography, role play, observation and drawing. Added to these methods are talking mats. Two studies describe the effectiveness of talking mats (Germain, 2004; Rabiee, Sloper, & Beresford, 2005). Talking mats are tools for people who have communication difficulties to express themselves. They utilise picture symbols that represent certain emotions, topics and options, which are then matched up together to reveal how the participant feels about their lives. Findings from both studies noted the simplicity of these tools and suggest that children use them with ease, that they find them enjoyable, and that they provide the non-verbal child with the ability to express their own opinions.
Rabiee et al (2005) developed their talking mat following a first stage whereby children with similar healthcare needs but who were able to use speech were interviewed along with their parents in order to develop the themes that would be used in the talking mats. The talking mats were then used with 11 children with a variety of physical and cognitive impairments, none of whom communicated through speech. The technique was effective in all cases in discovering the child’s choices and feelings about services provided to them (the focus of the research). Supporting the independence with which the children could report was the finding that parents were often surprised by how involved the child became and how expressive they could be.
Photography has been used in a number of studies, generally supported by other methods. For example, Germain (2004) used photographs along with the talking mats in her study with nine 16-year-olds with disabilities. She argued that “in using photographs the potential exists […] to find ways of thinking about social life that escapes the traps set by language” (p.170). This study found that giving participants a camera empowered them because it put them in control of expressing themselves and painting a picture of their worlds. Photographs also helped remind children of certain events and memories and thus aided the research process. Photography was also described by Ajodhia-Andrews (2016) as a positive method of allowing children to express themselves, made even more effective if paired with the child’s own descriptions.
The mosaic approach frequently includes photography, for example, cameras were part of the “tool box” for Gray and Winter (2011) but they also included “Molly the ragdoll,” drawings, stickers and tape recordings. By having a range of tools to hand, the researcher can select a means of communication suitable for the child (Gray & Winter, 2011). Ajodhia-Andrews (2016) suggests that multi-method approaches make the research process more inclusive and allow different children to play to their varying strengths. In that multi-ethnic study the six children were found to more easily communicate their views through numerous creative methods than through just one. Creative mediums used were artistic writing, story telling/story games, visual narratives through photography, and drawings. The DCYPPP outlined earlier in this document, also utilised a multi-method approach including in that study, drama, digital media, music, and various media and IT (Murray, 2012).
There are times when observation of the child in different situations over time can reveal certain aspects of a child’s experiences. Morris (2003) termed this “being with” (p. 345) a child as a means to understanding their experience. This can be particularly useful when the researcher is with the child in a range of different settings and can observe the child’s experiences in each. However, there is the risk with this method that a researcher will impose their own views and interpretations onto the actions of the child so it is important to be very careful about what observations are made.
Further information regarding specific approaches to working with children with disabilities can be found on the following websites:
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