Brady, Louca-Mai (2017) Rhetoric to reality : an inquiry into embedding young people's participation in health services and research. (PhD thesis), University of the West of England, .

Abstract

Whilst there is growing awareness of the case for children and young people's participation across the public sector, there is limited evidence on how this apparent commitment to participation and children's rights translates into professional practice and young people's experience of participation in health services and research. Participation in health tends to be driven by a public involvement and engagement agenda rather than discourses of participatory practice. Young people's views are still not consistently sought or acknowledged within healthcare settings; they are rarely involved in decision-making processes and often occupy a marginalized position in healthcare encounters. In addition to the piecemeal approach to participation in health services there have also been disparities in the characteristics of young people likely to participate, the types of decisions they are involved in making, and the extent to which this participation is meaningful and effective. This study drew on theories of participation and childhood, and considered how these were informed by debates around children's rights, citizenship and agency in relation to young people's participation in health services and research. Using a participative research approach informed by an action research methodology, the study sought to explore how participation was understood and operationalised in two case studies: a community children's health partnership and a randomised controlled feasibility trial. Through working collaboratively with adults and young people in these case studies, and informed by a wider process of collaborative inquiry, the study sought to build capacity through learning to inform the embedding of participation. This study found that participation in health services and research was still conceptualised primarily as adult-initiated, context-specific collective participation in formal settings which potentially excludes some of the young people most likely to use health services and limits the potential for fundamental change. The learning from the study identified the potential for new approaches which would do more to transfer power to young people, and informed a rights-based framework for embedding participation in practice.

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