Rhetoric to reality: An inquiry into embedding young people's participation in health services and research

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 settingswhich 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

Empower Evaluation: Summary Report

© 2023 The Author(s). This an open access work distributed under the terms of the Creative Commons Attribution Licence (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited

Evaluating the extent and impact of young people's involvement in National Institute for Health Research (NIHR) studies : an assessment of feasibility

A report on Generation R, a national Young Person’s Advisory Group (YPAG) (GenerationR, 2014), identified the need “to develop a systematic way to measure the impact of [young people’s] involvement activities” (Recommendation 10, GenerationR, 2014). Following previous unsuccessful attempts to address this issue, the James Lind Initiative commissioned this project to investigate the feasibility of measuring young people’s involvement in National Institute for Health Research (NIHR) studies. The project sought to identify data currently collected on the nature and impact of young people’s involvement by the NIHR Clinical Research Network: Children (CRN Children), and consider the scope for future data collection across NIHR. Stage 1 of this work assessed the availability, quality and reliability of existing data in the CRN Children portfolio through analysis of data available through the CRN Central Portfolio Management System (CPMS), the CRN Closed Study Evaluation Survey and the GenerationR YPAGs. A significant finding is that there is currently no way of identifying through existing CRN data collections or via GenerationR YPAGs which studies have involved young people, or indeed whether studies have involved young people in addition to parents, let alone assessing what form that involvement may have taken, who was involved or any impacts of involvement. Stage 2 involved a qualitative exploration of the issues and questions which had emerged from Stage 1 through conversations with key stakeholders from across NIHR. This work identified a need to better collate, understand and disseminate data on the nature and impact of young people's involvement in research using both existing systems and processes and the possible development of new metrics and measures. We found that NIHR data collection systems currently provide little scope to do more than identify whether or not there has been any public involvement. But there is potential within existing systems and processes to collect comparable data across studies on the nature, impact and influence of public involvement. This includes the suggested addition of a demographic measure on public involvement in the CPMS and the Integrated Research Application System which informs it, and in monitoring information including ResearchFish. NIHR funding applications, monitoring and reports also offer potential for secondary qualitative analysis of ‘free text’ information on the nature and impact of public involvement. A study recording form developed as part of an evaluation of the GenerationR YPAGs could be used to collect comparable information on the nature and impact of researchers’ work with YPAGs. Further research could address many of the issues raised and have wider applicability across NIHR public involvement, as well as generating specific learning on the nature, extent and impact of young people’s involvement in research

Involving young people in research : making an impact in public health

This is a post-peer-review, pre-copy edited version of a chapter published in 'Critical Perspectives on User Involvement'. Details of the definitive published version and how to purchase it are available online at: https://policy.bristoluniversitypress.co.uk/critical-perspectives-on-user-involvement.Peer reviewedFinal Accepted Versio

Provision for additional learning needs: the views of children and young people with developmental coordination disorder

This study was undertaken in partnership between NCB (National Children's Bureau) adn Bridgend County Borough Council(BCBC). The aim of this project was to raise awareness of the importance of listening to children with additional learning needs(ALN) about the support and services they receive in school

How do we know what works? Evaluating data on the extent and impact of young people’s involvement in English health research

The case for children and young people’s involvement in health research has been well documented, but less attention has been paid to the experiences and impact of involving children and young people rather than adults. This paper explores these issues in relation to a project undertaken for the James Lind Initiative on the availability, quality and reliability of existing data on young people’s involvement in studies supported by the National Institute for Health Research (NIHR). The project found that there was no systematic way of getting reliable and comparable information about which young people are involved in health research in England, what form that involvement may have taken or the impacts of involvement. There is a need to better collate and disseminate evidence on young people’s involvement in research, using both existing systems and processes, and the possible development of new metrics and measures. Not having this information risks children and young people’s involvement continuing to develop in a piecemeal fashion. Further research is needed about how, when and where children and young people are involved in health research, and about the impact of involvement on research and on the children and young people involved.</jats:p

BeeZee Bodies Evaluation: Summary Report

© 2023 University of Hertfordshire. This is an open access article distributed under the Creative Commons Attribution License, to view a copy of the license, see: https://creativecommons.org/licenses/by/4.0

BeeZee Bodies Embedded Ethnography Evaluation Project

The Centre for Research in Public Health and Community Care, University of Hertfordshire (UH) were commissioned by BeeZee Bodies (BZB) to bring academic insights and support BZB’s development of future services. This work aimed to explore: - How can BZB best engage diverse communities? - How can evidence and insights be considered from a range of professional perspectives and utilised to shape and influence service development? - If and how can BZB co-produce their services? The project used an ‘embedded ethnography’ approach, a qualitative methodology which enables collaboration and interaction between researchers and those responsible for planning and delivering services, as a way of developing more effective service delivery. This involved four main elements: participation in strategic oversight group (SOG) meetings, qualitative research training for BZB staff, observation of BZB meetings, and primary data collection (focus groups and interviews)

We know that our voices are valued, and that people are actually going to listen” : co-producing an evaluation of a young people’s research advisory group

Children and young people’s involvement is an increasing priority in healthcare and in heath research, alongside recognition that involving CYP in research requires different considerations to involving adults. Underpinned by children’s rights and a co-production ethos this poster and recorded presentation, from the 2023 Health Services Research UK conference, outlines the learning from a co-produced evaluation of eyeYPAG, a young persons’ research advisory group (YPAG) for eye and vision research based at Moorfields Eye Hospital, London.Peer reviewe