Co‐production to understand online help‐seeking for young people experiencing emotional abuse and neglect: Building capabilities, adapting research methodology and evaluating involvement and impact

Abstract

Background

Involving young people (YP) as co‐researchers (YCoR) in mental health research is important for ethical and epistemological reasons. However, approaches to involve and evaluate ‘meaningful involvement’ in complex qualitative mental health research, and how to evaluate impacts (or change) for the co‐researcher and the research is less well defined.

Objectives

This co‐produced research explored the experiences of YP seeking help for emotional abuse and neglect via an online, peer‐peer message board. This practical case study aims to evidence the meaningful role and impacts associated with YCoR involvement in sensitive and complex mental health research using a flexible approach to co‐production.

Methods

During the Covid‐19 pandemic, we explored on‐ and off‐line approaches and adapted research methodology to build relationships, knowledge, skills, and confidence with YCoR. The virtual involvement was evaluated against the five principles of co‐production. Anonymous, continuous digital feedback, reflective practices and multiple dissemination outputs are used to evaluate the impact of the study on those involved and the research.

Results

Ten members of NeurOX Young People's Advisory Group were involved in the core project. Additional members were invited at later stages and in the dissemination of outputs. We describe a supportive, scaffolded learning approach to build capabilities and embed the lived experience of YCoR in complex qualitative research. A digital blended approach was acceptable to YCoR, principles of co‐production were met and the impact/benefits of involvement are described. To demonstrate the epistemological value of involving YP we evidence YPs capabilities for involvement and the ‘change’ or contribution YCoR made to the research through reflective practices.

Conclusions

This case study demonstrates how flexible approaches co‐production with YCoR can be robust and responsive to balance ethical and epistemological impact in complex mental health research. Supportive, scaffolded practices and safe environments helped build the confidence and capacity of YCoRs to demonstrate valuable phenomenological insights in the analysis. YP's perspectives on how they describe ‘meaningful’ and impactful involvement illustrate the reciprocal benefits gained through working together.

Public Contribution

This case study describes the YCoR involvement throughout the research and dissemination of outputs. YCoR co‐authors were involved in developing the outline and reviewing the draft stages of the manuscript.