ArticleHealth expectations : an international journal of public participation in health care and health policy2020
Patient and Public Involvement of young people with a chronic condition in projects in health and social care: A scoping review.
Article in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 48 papers, 9 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
48 citing papers in PubMed, 9 syntheses or guidelines pooled it.
- Involving adolescents in evidence syntheses: an umbrella review.Systematic reviews · 2025Pooled 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
- Evaluation of research co-design in health: a systematic overview of reviews and development of a framework.Implementation science : IS · 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
- Systematic Review: Patient and Public Involvement of Children and Young People in Mental Health Research.Clinical child and family psychology review · 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
- Youth engagement in mental health research: A systematic review.Health expectations : an international journal of public participation in health care and health policy · 2023Pooled it
- How are health research partnerships assessed? A systematic review of outcomes, impacts, terminology and the use of theories, models and frameworks.Health research policy and systems · 2022Pooled it
- Using consumer engagement strategies to improve healthcare safety for young people: An exploration of the relevance and suitability of current approaches.Health expectations : an international journal of public participation in health care and health policy · 2022Pooled it
- Co-designing engagement principles for involving children and young people in palliative care research in low- and middle-income settings.Research involvement and engagement · 2026Article
- The Development of the Dance Smart Intervention: A Céilí Dance Exercise Intervention for People Living With Dementia and Their Care Partners (Dance Smart Intervention).Dementia (London, England) · 2026Article
- A practical step-by-step approach for patient and public involvement in eHealth intervention research: Lessons learned from three case projects.Internet interventions · 2026Article
- Measuring impacts of patient and public involvement and engagement (PPIE): a narrative review synthesis of review evidence.Research involvement and engagement · 2025Review
- Better together: participatory action research for co-constructing an intervention to enhance leisure activities in non-ambulatory adolescents with cerebral palsy.Research involvement and engagement · 2025Article
- The co-development and pilot evaluation of the Siblings Training, Empowerment, and Advocacy Kit (Siblings TEAKit) to support youth and young adult siblings of individuals with a disability: A participatory action research qualitative study protocol.Research involvement and engagement · 2025Article
- Article
- Human-centered design approach to building a transition readiness mHealth intervention for early adolescents.Journal of pediatric psychology · 2025Article
- Review
- How to address the barriers to meaningful adolescent involvement in health research: A qualitative study.Journal of research on adolescence : the official journal of the Society for Research on Adolescence · 2024Article
- A matrix tool to foster patient engagement in children, adolescents and young adults: report from a multistakeholder workshop.Research involvement and engagement · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe involvement of young people with a chronic condition in research and implementation projects in health and social care receives growing attention. Yet, there is a lack of conceptual clarity of this so-called 'Patient and Public Involvement' (PPI) and methods to systematically evaluate it are absent. This scoping review aimed to gain insight into developments in the existing literature on PPI of young people with a chronic condition by mapping reported definitions, goals, activities, experiences and impact.
methodsWe conducted searches in Cinahl, Embase, PsycINFO, PubMed and Scopus. Included articles described involvement of young people with a chronic condition in research and implementation projects, contained empirical data, were written in English and were published after 1990. Two researchers independently carried out the data extraction.
resultsTwenty-three studies out of 4993 initial hits met the inclusion criteria. We found great variation in definitions and operationalizations of PPI. Reflections of authors on the process of PPI and its impact were similar and did not change over the years. DISCUSSION AND
conclusionLimited progress in the evidence base of the impact of PPI with young people with a chronic condition was found. Over the years, studies continue to report similar experiences and challenges. In order to move forward, we suggest future research to make connections to existing work instead, to include thorough descriptions of what is understood by PPI and how this is translated into activities, and to use systematic and objective, but also flexible, methods to measure its impact.
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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.