Ethical ‘mess’ in co-produced research: reflections from a U.K.-based case study

Thomas-Hughes, Helen

doi:10.1080/13645579.2017.1364065

Cited by 80 publications

(42 citation statements)

References 46 publications

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“…As the research community has developed more experience of using participatory approaches, an informed and critical agenda to improve it has also emerged. It is increasingly recognised that participatory research with children is ethically, methodologically, and practically complex: it is a 'messy reality' and one that lacks clear and reflexive reporting about the challenges as well as the advantages (Fox, 2013;McCarry, 2012;Bishop 2014;Thomas-Hughes 2017), and is replete with 'issues and ambiguities' (Yorke & Swords, 2012, p.96). Common problems include securing additional time and resources to carry out work that is often relationship-based and responsive in nature, and, recognising that those children who do participate are not and should not be expected to be 'representative' of a larger group (INVOLVE, 2016;Uprichard, 2016).…”

Section: Issues In Participatory Research With Childrenmentioning

confidence: 99%

“…Used in tandem with voice in almost all the included studies, was the issue of empowerment as a reason to undertake participatory research and/or a positive outcome of the processes involved (Greco et al 2017;Iwasaki et al 2014;Noone et al 2016;Thomas-Hughes 2017;Vaughan 2014;Wernick et al 2014). However, like voice, there was a problematising of the notion among some researchers.…”

Section: Empowerment and Powermentioning

confidence: 99%

“…For example, on the issue of photovoice, Wickenden and Kembhavi-Tam (2014) claim that the camera imparts an element of control among the child or young person using it, regarding what, when and how they choose to photograph. The young women in Thomas-Hughes' (2017) study, exercised their power by changing from reflexive journals to video recordings.…”

Section: Empowerment and Powermentioning

confidence: 99%

“…For example, disabled children are very alert to being underestimated and are quick to detect being patronised (Wickenden & Kembhavi-Tam 2014). Thomas-Hughes (2017) reports how her relationships with young women in her study were imbued with intense value. She argues that this is important for a young person, particularly one who has experienced trauma, because being valued is often something that is missing in their lives.…”

Section: Accepted Manuscriptmentioning

confidence: 99%

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The complexities and contradictions in participatory research with vulnerable children and young people: A qualitative systematic review

Bradbury‐Jones

Isham

Taylor

2018

Social Science & Medicine

125

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Participatory research carried out by or with children, has become a well-established and valuable part of the research landscape investigating children's lives, views and needs. So too has a critical agenda about its ethical implications and methodological complexities. One criticism is that the involvement of children who may be considered 'vulnerable' or 'marginalised' has been slower to take root within mainstream participatory practice. This means that there has been less focus on how groups such as disabled children or children affected by abuse or neglect can shape and challenge adult-dominated types of knowledge and decision-making that are likely to affect them. This article reports on the findings of a qualitative systematic literature review of thirteen contemporary papers. The review was undertaken by a UK team in 2017. The included articles explored some core ethical and methodological issues involved in carrying out participatory research with vulnerable children and young people. It reports on three themes: 1) The extent to which participatory spaces could recalibrate opportunities and attention given to marginalised and silenced groups; 2) The ways in which these children and young people could develop skills and exercise political and moral agency through participatory activity, and, 3) How to facilitate meaningful engagement with individuals and groups and reconcile this with a critical appreciation of the important but limited nature of research as means of political and social change. The review provides a unique, contemporary analysis of participatory research with vulnerable children, illuminating in particular its conceptual complexities and contradictions, particularly regarding power, empowerment and voice. Its overall utility and interest is augmented by the disciplinary and geographical breadth of the included articles, rendering it relevant to many contexts and countries.

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Section: Issues In Participatory Research With Childrenmentioning

confidence: 99%

Section: Empowerment and Powermentioning

confidence: 99%

Section: Empowerment and Powermentioning

confidence: 99%

Section: Accepted Manuscriptmentioning

confidence: 99%

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The complexities and contradictions in participatory research with vulnerable children and young people: A qualitative systematic review

Bradbury‐Jones

Isham

Taylor

2018

Social Science & Medicine

125

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“…Indeed, as co-production grows in popularity, so grows the recognition that it represents an ethically and pragmatically complex ideal. [21][22][23][24] Concerns about this ideal range from practical considerations, such as the need for additional resources to carry out such collaborative work, to more substantive issues, such as potential tokenism and the politics of disagreement when young people's preferences clash with those of the researchers'. [25][26][27] Young people's involvement, moreover, requires researchers to confront an academic culture influenced by a view of children as 'unfinished adults', 28 who lack both rationality and moral agency, and who must be protected from the interests of academic institutions.…”

Section: Introductionmentioning

confidence: 99%

Co‐producing research with youth: The NeurOx young people's advisory group model

Pavarini

Lorimer

Manzini

et al. 2019

Health Expectations

124

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Context The 1989 UN Convention on the Rights of the Child states that children have the right to be heard in all matters affecting them. The Convention inspired a surge in research that investigates young people's perspectives on health and wellness‐related concerns and that involves children as ‘co‐researchers'. Young people's advisory groups (YPAGs) are a widely used method to enable young people's involvement in all research stages, but there is a lack of academic literature to guide researchers on how to set up, run and evaluate the impact of such groups. Objective In this paper, we provide a step‐by‐step model, grounded in our own experience of setting up and coordinating the Oxford Neuroscience, Ethics and Society Young People's Advisory Group (NeurOx YPAG). This group supports studies at the intersection of ethics, mental health and novel technologies. Our model covers the following stages: deciding on the fit for co‐production, recruiting participants, developing collective principles of work, running a meeting and evaluating impact. Results We emphasize that throughout this process, researchers should take a critical stance by reflecting on whether a co‐production model fits their research scope and aims; ensuring (or aspiring to) representativeness within the group; valuing different kinds of expertise; and undertaking on‐going evaluations on the impact of the group on both the young people and the research. Conclusion Adopting a critical and reflective attitude can increase researchers' capacity to engage youth in democratic and inclusive ways, and to produce research outputs that are aligned with the target audience's needs and priorities.

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How to Nurture Ground for Arts-Based Co-Creative Practice in an Invited Space: Reflections on a Community in North Netherlands

Davis

Nek

Horlings

2021

Co-Creativity and Engaged Scholarship

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This chapter provides inspiration for researchers and practitioners who aim to engage with a community using (arts-based) creative practices, inclusive of dealing with the challenges this presents. We do this by reflecting on an illustrative case, a community engagement strategy that nurtured the ground for such practice under ‘invited space’ conditions. The questions that guide this chapter are: How should a creative practitioner deal with the constraints of an invited space when engaging with a community in the initial stage of a project? And, how best then to respond to the needs of the community on their own terms, rather than to external interests? To address these questions, we draw upon a place-based, cultural project situated in a village in the north of the Netherlands. The village is currently in the midst of two significant spatial transformations, namely municipality boundary changes and the construction of a windpark within its immediate environment, which caused distress and opposition among the residents. The case demonstrates how a creative practitioner was able to flip the constraints of co-creating within an invitational space ‘on its head’ by transforming this challenge into an invitation from the community themselves to continue the project on their own terms. This reversal was enacted by the creative practitioner implementing a community engagement strategy that reflects many of the participatory action research principles outlined in Neal’s (Playing for Time: Making Art as if the World Mattered, 2015) ‘art of invitation’. The findings provide inspiration for researchers and practitioners that aim to apply arts-based co-creative practices, including how to navigate existing power balances and re-centre a cultural project towards the needs of the community.

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Ethical ‘mess’ in co-produced research: reflections from a U.K.-based case study

Cited by 80 publications

References 46 publications

The complexities and contradictions in participatory research with vulnerable children and young people: A qualitative systematic review

The complexities and contradictions in participatory research with vulnerable children and young people: A qualitative systematic review

Co‐producing research with youth: The NeurOx young people's advisory group model

How to Nurture Ground for Arts-Based Co-Creative Practice in an Invited Space: Reflections on a Community in North Netherlands

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