Abstract

This paper is based on in-depth, qualitative research with disabled children who use mediated communication in the form of high-tech Augmentative and Alternative Communication Systems (AACS). The study was carried out over a period of 18 months as part of the author's PhD research.

Key methodological issues for qualitative research are discussed within the paper, which is founded on the sociological understanding of childhood that recognises disabled children as competent research participants. The paper outlines specific issues that arose during the research process in relation to gaining access to disabled children and the challenges of interviewing inarticulate participants. Within this context, the methodological issues of consent and authenticity of voice are discussed, as they are considered particularly relevant to researchers who seek to include disabled children in qualitative research.

Introduction

Disabled children and young people have long been the subject of research. Historically, research into their lives has relied on adults' perspectives (Stalker and Connors, 2003) or has focused on children who were most verbally articulate (Begley, 2000; Fabbretti, Pizzuto, Viari and Vlterra, 1997). Despite the inclusion of disabled children in rights policies, such as the United Convention on the Rights of the Child (UNICEF, 1995), their 'voices' have been ignored. However, it is no longer acceptable to exclude disabled children simply because they are considered incompetent or pose challenges to traditional research methods. Indeed, researchers who have successfully collected the opinions and lived experiences of disabled children argue that placing the onus on researchers to adopt inclusive research strategies will take a greater account of diversity (see Alderson & Goodey, 1998; Davies, Watson & Cunningham-Burley, 2000 and Morris, 2003). If this stance is adopted universally, the inclusion of disabled children and young people within the research arena will become more commonplace.

This paper begins by discussing the methodological approach employed by the author in her Doctoral study. Some key ethical considerations relating to the implications of gaining informed consent when researching with disabled children will then be outlined in detailed. Particular attention is paid to important aspects of researching with inarticulate children, such as using mediated communication and developing rapport. Finally, consideration will be given to the ways in which the authenticity of voice was explored.

All participants in the study are registered as disabled, and researching a social category necessitates a definition of the population about whom the literature is being reviewed. The contentiousness of terminology regarding disability has been the cause for much academic discussion, and, clearly, it means different things to different people. Oliver (1983:261) observes that "it has been suggested that the term 'people with disabilities' should be used in preference to 'disabled people' because this prioritizes people rather than disability". However, he goes on to explain that 'disabled people' is the preferred terminology of those within the disabled movement because it makes a political statement: they are not people 'with' disabilities, but people who are disabled or disadvantaged by society's response to their differences (Oliver 1990). Throughout this paper, the terms 'disabled children' and 'children with disabilities' are used reciprocally and intentionally. 'Disability' will be placed purposefully either before or after 'children' to emphasize both social barriers and individual impairment.

For purposes of this paper, the researcher will focus on issues that relate specifically to researching with disabled children. However, it is acknowledged that these issues could be equally applicable to other research involving any child or young person.

The Study

Whilst the study is founded on the sociology of childhood in recognition of the agency and competency of children (James, Jenks and Prout, 1998), it also acknowledges that disabled children encounter barriers that exclude them and minimise their participation (Thomas, 2004). A methodological approach that directly engages disabled children was therefore employed to address some of the disabling barriers found in traditional research.

The aims of the study were as follows:

  • To understand disabled children's views and experiences of using high-tech communication aids in their everyday lives;
  • To explore the contexts that influence their use of high-tech communication aids;
  • To compare disabled children views and experiences of using high-tech communication aids with adult's perceptions of use;
  • To develop an appropriate methodology for disabled children to facilitate their voices in research.
  • This paper adds to existing literature on research with disabled children and young people in that it advocates an emancipatory and inclusive process. It argues for the recognition of the heterogeneity and diversity of disabled childhoods and suggests that methodological approaches should be reflexive and varied in accordance with both the research question and the individual abilities and preferences of the participants.

    Research with Disabled Children and Young People

    The intention of this study was not to produce information that could be generalised, nor to seek typicality or representativeness, but to gather unique, individual and 'rich' descriptions about disabled children's lives. Therefore, creativity and reflexivity were employed when designing approaches for consultation, and, to this end, 'bespoke' methods were adopted. In addition, a range of data collection tools were used, including participant observation, interviews and focus groups. This multi-method approach enabled the provision of important findings relating to disabled children's everyday experiences of using high-tech communication aids.

    Unlike other research methodologies beginning with and then proceeding to answer carefully crafted questions, the researcher found that researching with children was 'messy and emergent' (Huber & Clandinin, 2002:787). Indeed, whilst the sequencing of the data collection was important to the outcome of the study, the process was iterative rather than linear. In addition, not only was information gathered directly from the young participants themselves, other equally important information was gathered from a range of sources. This created what Eisner (1991:72) describes as a 'collage' where pieces of descriptive information were patched together to make a recognisable 'whole'.

    Whilst sensitive, skilful questioning techniques and building rapport with children pushes against notions of distance and the maintenance of objectivity, Emond (2005) suggests that when researching with children, one cannot be disconnected from the process. Indeed, the author found that her role as researcher was inextricably linked with other roles such as volunteer-helper and mother of a disabled child, becoming what Rose (1997:308) terms as a 'multiple self' where existing subject knowledge and understanding tangled together with experience. In order to address this, a reflexive stance was adopted where the negotiation and re-negotiation of roles throughout the research process was required. Only then was the researcher able to pay attention openly and honestly to the ethical dynamics of conducting research with disabled children.

    Negotiating Access

    One of the first issues to address when seeking to involve disabled children in research is that of gaining access. Access to children for research purposes usually involves a complex process of negotiation with adults, gatekeepers and parents/carers. Indeed, before granting permission the University Research and Ethics committee required documentary evidence that consent would be sought from all parties involved. First, the school was asked for their consent to conduct the research within their setting. They then sent letters to parents/carers on behalf of the researcher and finally, following parental approval, children were independently consulted to gain their informed consent for inclusion in the research. Ironically, the disabled children and young people were last in this complex chain of consent—their voices were only to be heard once many layers of adult consent were negotiated.

    Tensions between the social process of gaining informed consent to participate is fuelled by the continuing debate regarding whether or not disabled children are able to consent independently or whether adults should consent on their behalf. The process of contacting the children only after consent is gained from parents/carers is considered good practice, for parents/carers make daily decisions based on what they deem to be within the child's best interests. However, this presented a dilemma for a child-led research study such as this because, ultimately, parents/carers could restrict the child's opportunity to participate in the research. Consequently, if a child or young person consents to participate in research but the parent/carer refuses, researchers must respect the adult's decision (Butler and Williamson, 1994). This, Lloyd-Smith and Tarr (2000) suggest, not only impinges on the child's rights to be heard, but also on their rights to express their views on matters of concern to them.

    Familiarisation visits and developing rapport

    In response to the challenges posed by researching with inarticulate children, this small scale study accommodated bespoke and mixed methods of gaining consent that were not wholly reliant on language. Indeed, throughout the study, the process of consent was revisited regularly to give each child opportunities to remind them of their rights to withdraw. However, once the author had gained access and informed consent as required, a series of familiarisation visits was undertaken. Developing rapport and getting to know each other introduced a relaxed approach which helped to facilitate communication. Indeed, whilst the children expressed themselves through mediated communication, they also used a range of non-verbal cues, such as body language, engagement, facial expression and body movement. In addition, taking time to get to know the participants helped to deconstruct unequal power relations between the author and the children. Unfortunately, in the case for many other research projects, time and resource constraints make the use of such methods impossible.

    Interviewing Disabled Children and Young People

    Following on from the initial stages of familiarisation and participant observation, semi-structured interviews were held with adults as verification strategies (see Morse et al, 2002) to establish validity of the observations undertaken. Their views of disabled children's use of high-tech communication aids were also sought. Once these were obtained and analysed, semi-structured interviews were arranged in consultation with the disabled children. Whilst the research conversations were based on the themes arising from the analysis of the previous data, others could be added as the respondent's unique experiences and feelings were revealed. This meant that even though the respondents addressed issues relevant to specific research questions, they also could discuss what they deemed to be significant.

    The language employed in the interviews with the children was considered carefully and, as Alderson and Goodey (1998) suggest, efforts were made to ensure that questions and explanations were clear. The participant's own language style was adopted by the author and reflective techniques were employed to check that understanding matched the child's response. However, much resourcefulness was required to engage the young participants in research conversations; as Westcott and Littleton (2005:141) suggest, it is "easy to forget that children may rarely be spoken to, or seriously listened to, unless they have done something 'wrong'". Simons et al (1989) go as far as to suggest that as most disabled children and young people's lives are controlled by others, they have a tendency towards acquiescence. Indeed, getting the disabled children to talk about their lived experiences proved challenging in a variety of different ways.

    Most of the young participants' primary method of communication was mediated through AACS, and in terms of the interviewing process, it was vital that the author worked at the pace of the child, waiting patiently and attentively for their answers. The process was often physically tiring for the participants, and in the interest of the child, some interviews were abandoned and re-visited at a later date. The researcher responded sensitively to the verbal and non-verbal responses given and made comments that neither questioned the accuracy of their response, nor patronized the participants, but merely confirmed understandings. In addition, the researcher was open and honest about not always understanding and asked for clarification. Not only did this lead to developing a closer rapport with the children, but also demonstrated active listening.

    Communication

    Communication in the context of researching with disabled children encompassed all methods of transferring information and participating in dialogue, including speech, writing, signs, symbols, body language, facial expression, gesture and verbalisation (Davies et al, 2000; Morris, 1998). For the purposes of continuity and maintaining confidence, pre-established communication methods were utilised when interviewing the young participants rather than adopting a new range of communication aids.

    Conducting research with children was underpinned by viewing them as competent social actors. Therefore, the researcher spent a long time familiarising herself with the various communicative techniques employed by individual participants in recognition of their agency and expertise. In addition, and in order to focus on the participants individual communication methods rather than how their impairment affects their ability to use conventional methods of communication, each user was invited to demonstrate the functions and applications of their AACS to her. Not only did this enable the researcher to gain a greater knowledge and understanding of the range of aids used, it also allowed a respectful relationship to flourish.

    Collecting background information from significant adults was helpful in that it helped personalise interviews for the children and eliminated asking inappropriate questions. However, it was also important not to be unduly influenced by this and remain open to the views of the children themselves. In one instance, staff underestimated the young person's ability to actively participate in the research, emphasising that she was uncommunicative and hard to engage with. In reality, this participant engaged fully throughout the interview, and on several occasions she diverted from the core questions to areas of her own interests. At one point, she took control of the interview and assumed the role of the interviewer, and the researcher became the interviewee! Crucially, whilst recognising that background information was helpful to verify observations and prepare for interviews with the young people, the information gathered from significant adults did not influence the researcher's perceptions of their ability.

    Analytical Processes

    Data analysis followed the data collection in quick succession in order to shape and inform the next stage of the research. The data was organised into key themes that were considered relevant to the scope of the research. These themes drove the next stage of data collection and underpinned the questions asked and the topics explored. It was recognised that the children should have the opportunity to comment on the findings, and one way to circumvent researcher bias was to invite the young participants to review initial findings. To avoid the time delay between collecting the data and writing up the thesis before disseminating the findings, the researcher organised focus groups as a strategic verification platform where the young participants could comment on the findings soon after the last interviews had been transcribed and analysed. This provided what Maxwell (1992) terms as "interpretive validity". The young participants informed the researcher that they liked hearing the overall findings, and, therefore, this method of dissemination was deemed effective. However, it is acknowledged they were not involved in process of analysis, nor were they offered opportunities to comment on the emerging themes. Within the framework of the sociology of childhood, it is important that researchers respect the rights of disabled children and young people in order to encourage active participation in the entire research process. Clearly, there is further work to be done if disabled children are truly to be included in research.

    Authentication of voice

    Many practical and ethical challenges arose during the research. At times, the research became complex and confusing because seeking disabled children's voices as indicators of expression often exceeded ways of hearing, knowing and understanding. 'Voice' clearly occurred in spoken utterances, but also in silence, behaviour, body language and facial expression. Traditionally, disabled children's voices have been limited within research both by adults' perceptions of their capability and because of the unconventionality of expression. In response to this, Mazzei (in Jackson & Mazzei, 2009) proposes that listeners should employ attentiveness and openness in order to render silent voices as valuable contributors to the soundscape. Jackson (2003), however, cautions researchers not to be tempted to fill the spaces in the silent data with their own desire.

    The young participants with few words could not easily articulate answers without AACS, and so the researcher became responsible for being more attentive to what goes unsaid (Booth & Booth, 1996), paying attention to body language, eye contact, eye pointing and facial expression as additional means of communication. Whilst all participants had individual means of communicating simple yes/no answers, without the aids, many of them had little opportunity to expand on this. Indeed, at times the interviews were in danger of becoming more like an interrogation, eliciting one word (or one expression) answers to the questions posed. Even though the young participants were 'lent' voices by their AACS, it was generally adults who programmed the aids with vocabulary deemed appropriate for general use or curriculum purpose. Therefore, the authenticity of the young participants' choice of words was questionable, and this posed what Alcoff (in Jackson and Mazzei, 2009:12) terms a 'crisis of representation'. Not only was the authenticity of voice a concern, but the author also experienced insecurity of speaking about others or for others either adequately or justifiably.

    Conclusion

    This paper has provided a detailed discussion of some of the methodological issues that arose from researching with disabled children. The theoretical framework based on the sociology of childhood helped to promote the qualitative research methods adopted for this study in recognition of the rights and abilities of disabled children. Indeed, the active participation of the young people within the research process highlighted their competency and abilities as social actors. Ethical dilemmas that were evident from the beginning of the study remained throughout the research process, and in order to recognise these challenges, researchers are urged to employ reflexivity and creative ways of involving disabled children and young people at all stages of the research. Indeed, future research with disabled children and young people should aim to seek to ensure that adequate time and resources are available from the outset to utilise these methods fully.

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    Copyright (c) 2011 Allison Boggis



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