Researching disabled children and young people’s views on decision-making: Working reflexively to rethink vulnerability (original) (raw)
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2015
Young disabled people are still rarely involved in the research process, despite an increasing emphasis on their inclusion as participants. The Participation in Education (PIE) project examined how disabled children with little or no speech could be involved in their education. The project team worked with an existing group of young disabled people to develop ways in which they could take part in the research process. The group was involved in developing the methodology, group work, observation, commenting on findings and in the dissemination process. Their involvement undoubtedly enriched the research and the benefits of working with an established group were manifold. Introduction Until recently, it has not been usual for young disabled people to be consulted in research, let alone be active participants in the research process. In the UK, the requirement to ascertain the views of children began with the 1975 Children Act and was reinforced in the Children Act 1989 (Franklin and S...
Research decisions: Living with Duchenne Muscular Dystrophy
Duchenne muscular dystrophy (DMD) is a severe form of muscular dystrophy that affects males. Muscle deterioration leads to increasing levels of disability during childhood and adolescence, with death commonly occurring in the late teens or early twenties, although changes in care and treatment are leading to increasing numbers of boys with DMD living into adulthood. Parents and parent-led charities are raising funds to find effective treatments and a cure, and much of the medical research they promote requires the participation of those with DMD. This raises questions about children and young people’s involvement in research, including their role and approach to consent and how willing they are to be involved in the medical research their parents and DMD charities advocate. Through qualitative interviews with nine boys and young men with DMD and one young woman with muscular dystrophy, I explored their thoughts on medical research and the broader issue of how they live and cope with their condition. As part of this discussion I examined how they might make a decision to participate in medical research, focusing on the processes, interactions and individuals they consider important in helping them to decide. My approach privileges the participants’ thoughts and opinions, positioning them as able social actors (James & Prout 1997) who can provide insight into their experiences. Currently little is known about the lives of children and young people with a significant, degenerative disability, particularly around their thoughts on medical research participation and decision-making (Dixon-Woods 2006). The views of my participants provide the basis for this research, with work from the sociology of childhood and from disability studies informing and contextualising it. The way in which parents are involved in daily life is discussed to gain an understanding of how the participants work with those they trust. This relationship may provide understandings of how decisions are influenced by family input and how support assists those who are young and have a degenerative condition. It is possible that this model of working with the significant people in their lives promotes agency and independence, aiding the participants towards, rather than away from autonomy.
Involving disabled children and young people as partners in research: a systematic review
Child: care, health and development, 2015
Children and young people can be valuable partners in research, giving their unique perspectives on what and how research should be done. However, disabled children are less commonly involved in research than their non-disabled peers. This review investigated how disabled children have been involved as research partners; specifically how they have been recruited, the practicalities and challenges of involvement and how these have been overcome, and impacts of involvement for research, and disabled children and young people. The INVOLVE definition of involvement and the Equality and Human Rights Commission definition of disability were used. Relevant bibliographic databases were searched. Websites were searched for grey literature. Included studies had involved disabled children and young people aged 5-25 years in any study design. Reviews, guidelines, reports and other documents from the grey literature were eligible for inclusion. Twenty-two papers were included: seven reviews, eig...
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Global Studies of Childhood, 2016
Duchenne muscular dystrophy is a progressive muscle-wasting condition that only affects boys, most use a wheelchair by the age of 12 and increasing levels of support and medical intervention are needed as they mature into young adulthood. Medical research is working to find treatments and an eventual cure for Duchenne muscular dystrophy, and this research can require the participation of those with the condition. Therefore, boys and young men who have Duchenne muscular dystrophy were invited to discuss their thoughts on how they might make a decision to take part in medical research, and to explore issues impacting their daily lives. Their accounts highlight experiences of agency and contextualised competence, challenging assumptions of vulnerability and immaturity in those who are young and severely disabled. The findings, based on fieldwork in England, enrich understandings of how such lives have meaning, wherein agency, independence and decision-making capabilities are present an...
2012
"Childhood studies have argued for the social construction of childhood, respecting children and childhood in the present, and recognising children's agency and rights. Such perspectives have parallels to, and challenges for, disability studies. This article considers such parallels and challenges, leading to a (re)consideration of research claims to represent children's ‘voices’ and the current promotion of children's participation as researchers. It concludes how research with disabled children encourages due account of multiple communication methods to access, analyse and present research, and being more reflexive about assumptions of competency, expertise and agency in the roles of researcher and research participant. "
Involving children's perspectives: An Emerging Trend in Disability Research
The educational landscape for children with special needs has undergone vast changes. A trend can be discerned which explores the views of children and young people. It includes the voices of these children on the issues affecting their lives. Eliciting and understanding children's perspectives have become increasingly important for various reasons. Children are now considered more competent than previously thought in their ability to comment on their own lives and to be involved in making decisions. Researches available in this area reveal the valuable contribution that children and young people can make to debate. This article deals with the importance of involving the perspectives of children with disabilities in researches conducted related to them and it also focuses on the methods and techniques which can be used to elicit the perspectives of these children.
Despite the acknowledgement that individuals with intellectual disabilities are the experts on their own experiences, these individuals have been largely omitted from the disability discourse. Research in the field of disability has typically been done on individuals with disabilities, rather than with them, disempowering this already vulnerable population. Qualitative methodologies, such as Participatory Action Research (PAR), can be employed to involve individuals with intellectual disabilities in the research process. A review of the literature revealed a number of ethical (e.g., obtaining informed consent and assessing capacity) and practical challenges (e.g., recruitment, data collection, analytic strategy, researcher interpretation) that interfere with researchers engaging in PAR. These challenges must be overcome in order to empower persons with intellectual disabilities to participate in research.
Methodological issues for qualitative research with learning disabled children
International Journal of Social Research …, 2007
This paper discusses key methodological issues for qualitative research with learning disabled children, based on the author's experience of involving learning disabled children in her doctoral study. The study was founded on the social model of disability and a sociological understanding of childhood that recognizes the abilities of disabled children as competent research participants. Issues that arose throughout the research process, from the early stages of gaining access to children, to communication challenges for interviewing learning disabled children, and the analysis and dissemination of data, are discussed. Within this context, this paper explores key methodological issues for researchers with regard to interviewing learning disabled children and actively involving them in qualitative research.