Co-production to understand on-line help-seeking for young people experiencing emotional abuse and neglect: building capabilities, adapting research methodology, 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: The co-produced research explored experiences of YP seeking help for emotional abuse and neglect via an on-line, 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 flexible 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 of 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 (YPAG) were involved in the core project. Additional members were invited at later stages and in 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 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 draft stages of the manuscript.

Developing a novel co‐produced methodology to understand ‘real‐world’ help‐seeking in online peer–peer communities by young people experiencing emotional abuse and neglect

“…Critical contextual and psychological evidence from the interpretative phenomenological co-analysis reported in detail in Bennett et al ( 2022) 19 informed the co-produced thematic and conversation analyses reported here embedding YCoRs lived experience throughout the study. 19,34…”

“…Full details of the YCoR recruitment, characteristics and co-production involvement methodology is detailed elsewhere. 34 In summary, 10 YCoR from the NeurOX Young people's Advisory Group (YPAG; in the Neuroscience, Ethics and Society Group in the Department of Psychiatry and University of Oxford), some of whom had used the service, were enlisted to the research project team and followed the group's agreed principles of co-production and terms of reference. 35 NVivo (v12) qualitative software was used by one of the adult researchers (VB) to annotate and code extracts of the text and organise identified themes as they were discovered; data was exported to Excel to share with YCoR.…”

“…Inclusion criteria, data selection, sampling and the role of YCoR in the process is described in detail in the companion papers. 19,34…”

“…Challenges and future directions relevant to data sampling from 'real-world' data sources and participatory involvement are reported in the companion papers. 19,34 A key methodological limitation of 'real-world' analysis is determining effectors of change and outcomes since it is not possible to know whether CYP contacted other services after engaging with peers. Although change described in this paper may serve as a surrogate outcome, only so much can be inferred from this small study of written posts and threads.…”