ArticleHealth expectations : an international journal of public participation in health care and health policy2022
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.
Article in Health expectations : an international journal of public participation in health care and health policy, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed, 17 citations in OpenAlex.
- Conceptualising and operationalising 'patient and public involvement' (PPI) and 'responsible research and innovation' (RRI) in youth mental health research: a scoping review.Research involvement and engagement · 2026Review
- Collaborating With Young People: Identifying the Barriers and Facilitators in Co-Designed Research.Health expectations : an international journal of public participation in health care and health policy · 2025Review
- Adapting Experience-Based Co-Design to Disability Research: Co-Producing the CycLink Co-Design Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Codesign is the zeitgeist of our time, but what do we mean by this? A scoping review of the concept of codesign in collaborative research with young people.Health research policy and systems · 2025Article
- Anything goes for participant, patient and public involvement in youth mental health research.JCPP advances · 2024Article
- No decision about me, without me: Collaborating with young people in mental health research.JCPP advances · 2024Article
- Benefits, barriers and recommendations for youth engagement in health research: combining evidence-based and youth perspectives.Research involvement and engagement · 2024Review
- Exploring children and young people's experience of participating in citizen science-A qualitative evidence synthesis.PloS one · 2024Article
- 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.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- 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.Health expectations : an international journal of public participation in health care and health policy · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundInvolving 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.
objectivesThis 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.
methodsDuring 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.
resultsTen 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.
conclusionsThis 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.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.