Working on Well‐Being: Researchers’ Experiences of a Participative Approach to Understanding the Subjective Well‐Being of Disabled Young People

Beresford, Bryony

doi:10.1111/j.1099-0860.2012.00436.x

Cited by 28 publications

(26 citation statements)

References 9 publications

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“…This suggests the need for relationships to be made with participants and peers/family/carers over an extensive period of time in order to understand the extent to which individuals are able to have their views heard through facilitated approaches (Mitchell, 2010). This is even more the case when we consider children with severe communication difficulties, who are reliant on interpretation of their views and wishes through adult intermediaries (Beresford, 2012). Morris reported a methodology of "being with" young people who had no language in order to understand their experiences:…”

Section: Critiques and The Search For Constructivist Approachesmentioning

confidence: 99%

“…Whilst this is an important observation in respect of the ways in which environmental context may influence interactional behaviour, the children in her study were described as having disabilities that were "moderate to severe" (2008, p. 166). Regardless of the level of children's impairments, debates are apparent in the literature about the extent to which the use of child-friendly and creative methods are strategically facilitative in providing access to the views of disabled children, or whether they are part of a broader project enabling the fuller participation of disabled children in the research processes (Beresford, 2012).…”

Section: Critiques and The Search For Constructivist Approachesmentioning

confidence: 99%

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From Individualism to Co-construction and Back Again: Rethinking Research Methodology for Children with Profound and Multiple Learning Disabilities

Simmons¹,

Watson²

2014

Child Care in Practice

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Children with profound and multiple learning disabilities (PMLD) are said to experience severe congenital impairments to consciousness and cognition stemming from neurological damage. Such children are understood as operating at the pre-verbal stages of development, and research in the field typically draws conceptual resources from psychology to devise educational interventions and assessment tools. Criticism has been levelled at studies that treat children with PMLD as objects of research rather than subjects to be consulted. Proponents of the latter view have attempted to redress the situation by exploring how personal experiences can be gleaned through adapted qualitative methods. Debate about methodology in the PMLD field tends to coalesce around these individualist polemics: either children with PMLD are positioned as incompetent and lacking voice; or researchers are positioned as lacking the appropriate tools to gain access to such voice. This paper offers an alternative position to the individualism of post-positivist/constructivist approaches, identifying the need for a critical and participatory approach that sees knowledge about children with PMLD as situated and co-constructed through regular and longitudinal interaction between the researcher, children with PMLD, and significant others. Context to this argument is provided by exploring the application of this approach to an inclusive education research project for a child with PMLD.

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Section: Critiques and The Search For Constructivist Approachesmentioning

confidence: 99%

Section: Critiques and The Search For Constructivist Approachesmentioning

confidence: 99%

From Individualism to Co-construction and Back Again: Rethinking Research Methodology for Children with Profound and Multiple Learning Disabilities

Simmons¹,

Watson²

2014

Child Care in Practice

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“…Disabled children and young people (DCYP) have been less commonly involved in research (Morris ; Kembhavi & Wirz ; Beresford ), perhaps because of perceived difficulties with access, communication and negative assumptions about their abilities (Clavering & McLaughlin ; Allsop et al . ; Beresford ). Involving disabled children in research is vitally important; they are ideally placed to say what works and how things can be better for themselves and their families.…”

Section: Introductionmentioning

confidence: 99%

Involving disabled children and young people as partners in research: a systematic review

Bailey

Boddy

Briscoe

et al. 2014

Child

135

223

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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, eight original research papers, three reports, three guidelines and one webpage. Nine examples of involvement were identified. Recommendations included developing effective communication techniques, using flexible methods that can be adapted to needs and preferences, and ensuring that sufficient support and funding is available for researchers undertaking involvement. Positive impacts of involvement for disabled children included increased confidence, self-esteem and independence. Positive impacts for research were identified. Involving disabled children in research can present challenges; many of these can be overcome with sufficient time, planning and resources. More needs to be done to find ways to involve those with non-verbal communication. Generally, few details were reported about disabled children and young people's involvement in studies, and the quality of evidence was low. Although a range of positive impacts were identified, the majority of these were authors' opinions rather than data. There remains scope for methodological research to inform appropriate approaches to public and patient involvement in childhood disability research.

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“…This exclusion is echoed in research contexts, where disabled children and young people are less commonly involved in research than their non‐disabled peers (Bailey and others, ). Thus, despite similar emphases in policy on the participation of disabled children and young people (Every Child Matters, 2003; Children's Act 2004), the disabled child and/or young person remains conspicuously absent, or at best marginalised, across research contexts, as well as in much of the practical research guidance referenced above, although there are some exceptions (see Bailey and others, ; Beresford, ; Nind and others, ). Our preliminary read of such guidance reveals disability as present primarily only through concerns about safeguarding, accessibility and gatekeeping, and as that which demands extra time, resources, and planning on the part of the academic researcher (see Bailey and others, ).…”

Section: Introductionmentioning

confidence: 99%

“I was Excited by the Idea of a Project that Focuses on those Unasked Questions” Co‐Producing Disability Research with Disabled Young People

et al. 2018

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In this article, we detail the politics and practicalities of co‐produced disability research with disabled young people with life‐limiting and life‐threatening impairments. We centre an ESRC‐funded arts‐informed co‐produced research project that has brought together a Co‐Researcher Collective of disabled young people. Co‐production is an established approach; however, our co‐researchers have led us to develop inclusive research practices that engage with online social research methods in innovative ways. As we detail our experiences, we aim to encourage disability studies researchers and others to adopt virtual environments when researching with and for the lives of disabled people.

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Working on Well‐Being: Researchers’ Experiences of a Participative Approach to Understanding the Subjective Well‐Being of Disabled Young People

Cited by 28 publications

References 9 publications

From Individualism to Co-construction and Back Again: Rethinking Research Methodology for Children with Profound and Multiple Learning Disabilities

From Individualism to Co-construction and Back Again: Rethinking Research Methodology for Children with Profound and Multiple Learning Disabilities

Involving disabled children and young people as partners in research: a systematic review

“I was Excited by the Idea of a Project that Focuses on those Unasked Questions” Co‐Producing Disability Research with Disabled Young People

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