ArticlePloS one2021
Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.
Article in PloS one, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 61 papers, 8 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
61 citing papers in PubMed, 8 syntheses or guidelines pooled it.
- Barriers and Facilitators to The Involvement of Under-Represented Children and Young People (aged 8-25) in Mental Health Research - a Systematic Review.Clinical child and family psychology review · 2025Pooled it
- Updates on digital mental health interventions for children and young people: systematic overview of reviews.European child & adolescent psychiatry · 2025Pooled it
- Involving adolescents in evidence syntheses: an umbrella review.Systematic reviews · 2025Pooled it
- Pooled it
- Patient and Public Involvement Work With Parents of Children With Life-Limiting Conditions and Bereaved Parents: A Rapid Systematic Review.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Public involvement in Australian clinical trials: A systematic review.Clinical trials (London, England) · 2024Pooled it
- Involvement of children and young people in the conduct of health research: A rapid umbrella review.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- An umbrella review of reviews on challenges to meaningful adolescent involvement in health research.Health expectations : an international journal of public participation in health care and health policy · 2024Pooled it
- Children's Communication Choices About Musculoskeletal Pain and Injury: Insights From a Public Involvement Event.Health expectations : an international journal of public participation in health care and health policy · 2025Trial
- Reflections on and recommendations from the OCEANIC study CYP and parent advisory group: a Patient and Public Involvement and Engagement case study.Research involvement and engagement · 2026Article
- Evaluating Patient and Public Involvement and Engagement Activity Within the 3DPiPPIn Trial: A Qualitative Exploration of Contributors' Perspectives on Their Impact.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Adolescent Involvement in Co-Authoring Peer Reviewed Publications: A Reflection of Challenges and Best Practice Recommendations.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- A Youth-Led Evaluation of Adolescent Involvement in a Project on Development of Guidelines for Adolescent Involvement in Health Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Improving Collaborative Engagement in Health State Valuation: A Scoping Review of Current Practices and Emerging Recommendations.PharmacoEconomics · 2026Review
- Evaluation Tools for Patient and Public Involvement (PPI) in Health Research: A Scoping Review.The patient · 2026Article
- Adolescent advisory groups in the ALIVE study: Feasibility and acceptability in global mental health prevention research.Global mental health (Cambridge, England) · 2026Article
- Migraine and Trauma-Informed Care: A Review of the Literature and Recommendations for Clinical Practice and Research.Current neurology and neuroscience reports · 2025Review
- Characterizing research partnerships in child health research: A scoping review.Journal of child health care : for professionals working with children in the hospital and community · 2025Article
- Engaging in purposeful patient and public involvement with young people living with obesity: recommendations from the ARROWS residential weekend.Research involvement and engagement · 2025Article
- Engaging Young People With Mental Health Needs and Exploring Outputs From a Resource Development Project: Qualitative Interview Study.Journal of participatory medicine · 2025Article
1 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThere has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research.
methodsRelevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made. MAIN
findingsA total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people's involvement in PPIE was limited.
conclusionsConsultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.
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Registered trials
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.