The burden of proof: The process of involving young people in research.

Gail Dovey‐Pearce,Sophie Walker,Monica Parker,Tim Rapley,Sophie Fairgrieve

doi:10.1111/hex.12870

Abstract

Patient and public involvement in research includes non‐academics working with researchers, on activities from consultative tasks, to joint working, and on user‐led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical “proof” to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully. These areas are beginning to be reported upon but there are few studies of young people involved in health research. This study describes the experiences of adult academics and young people, working together on a large‐scale, UK health research programme. Using qualitative interview and focus group methods, the aim was to explore participants’ perceptions about the process and outcomes of their work together. The importance of cyclical, dynamic and flexible approaches is suggested. Enablers include having clear mechanisms for negotiation and facilitation, stakeholders having a vision of “the art of the possible,” and centrally, opportunities for face‐to‐face working. What is needed is a continuing discourse about the challenges and benefits of working with young people, as distinct from younger children and adults, understanding the value of this work, without young people having to somehow “prove” themselves. Involvement relies on complex social processes. This work supports the view that an improved understanding of how key processes are enabled, as well as what involvement achieves, is now needed.

Highlights

S “Patient and public involvement” refers to the roles for service users and members of the public in defining, delivering and disseminating research
This study describes the experiences of adult researchers and young people involved in a large-scale, UK health research programme, exploring the process of working together and the outcomes of that work
The face-to-face work of building relationships is highlighted, along with the need to focus on the emotional, as well as the practical issues that arise. We suggest that this is likely to be relevant to all involvement work, but a central challenge is to understand how approaches might need to be adapted when working with young people in research, as distinct from younger children and adults

Summary

| INTRODUCTION

1.1 | Overview of involvement activities “Patient and public involvement” refers to the roles for service users and members of the public in defining, delivering and disseminating research. Involvement includes activities on a continuum from consultative tasks, through to “partnership working,” to service-user-led. We suggest that adult researchers might re-evaluate assumptions about the capabilities of young people as researchers, without a burden upon them to prove their worth. This does not mean that adult involvement practices can be adopted uncritically. We hope this work makes a timely contribution, by highlighting techniques and approaches that could be useful in working with those aged around 11-25

| Aim

| METHODS

| DISCUSSION

| CONCLUSION