ArticleResearch involvement and engagement2019
'A group of totally awesome people who do stuff' - a qualitative descriptive study of a children and young people's patient and public involvement endeavour.
Article in Research involvement and engagement, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05214352 (Using the Involvement Matrix for the Implication of Young People With Cerebral Palsy in the Elaboration of an Intervention Program to Encourage Participation in the Community.), which is not on this map. Cited by 11 papers.
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.
Using the Involvement Matrix for the Implication of Young People With Cerebral Palsy in the Elaboration of an Intervention Program to Encourage Participation in the Community.
Who cites it
11 citing papers in PubMed.
- 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
- Exploring Responsible Research and Innovation (RRI) in youth mental health: reflections from researchers and young people.Research involvement and engagement · 2026Article
- Patient and Public Involvement in Paediatric Pragmatic Randomized Controlled Trials: A Mixed Methods Study.Children (Basel, Switzerland) · 2025Article
- 'Co-Production Is Caring': Young People's Reflections on Responsible and Dialogic Co-Production in Youth Mental Health.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Exploring How Children and Young People With Sickle Cell Disease and Their Families Want to be Involved in Research: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2025Observational
- 'Including us, talking to us and creating a safe environment'-Youth patient and public involvement and the Walking In ScHools (WISH) Study: Lessons learned.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- A qualitative study exploring the benefits of involving young people in mental health research.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Involving Children in Health Literacy Research.Children (Basel, Switzerland) · 2022Article
- The attitudes of healthy children and researchers towards the challenges of involving children in research: an exploratory study.Research involvement and engagement · 2021Article
- Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.PloS one · 2021Article
- Laying the groundwork: Building relationships for public and patient involvement in pre-clinical paediatric research.Health expectations : an international journal of public participation in health care and health policy · 2020Article
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
backgroundIn 2013, the Cambridge Clinical Research Facility (CCRF) set up a Children's Non-Executive Research Board to advise on service and facility development and research involving children and young people (CYP). In 2015, the Children's Experiences of Engaging in Research study (CHEER) was conceived to explore the Children's Board as a patient and public involvement initiative.
aimTo explore the views of CYP, staff and parents involved in the Children's Board with the view to describe their experiences of the selected mechanism of involvement (Children's Board) within the context of operation (CCRF).
methodsA qualitative descriptive methodology involving qualitative content analysis of semi-structured interviews was used to derive descriptive summaries of the interview data. SETTING AND
participantsInterviews were carried out with staff (
resultsTwelve descriptive summaries emerged: (1) CCRF 'role' perspective (2) purpose, remit and future direction (3) aspirations (4) learning as reciprocation (5) regular meetings, contact and feedback (6) expectation setting and ground rules (7) culture of PPI (8) surprise, underestimation and self-selection (9) reciprocity, incentivisation and participation (10) practicalities, timing and barriers (11) parental roles (12) event structure. These highlighted the importance of selecting the right mechanism of involvement in relation to context for involvement and the reductive biases adults and healthcare providers may unconsciously hold. Both of these aspects may affect the efficacy of PPI endeavours with CYP. DISCUSSION AND
conclusionsMechanisms by which CYP are involved in research should be considered from the outset; taking into consideration both the setting and contextual features. Contextual and process factors important in the adult PPI realm were generally observed in this PPI initiative with CYP; however further research is required to explore unconscious biases and reductive perceptions in adult facilitators.
Indexed as
Identifiers
What OpenQuestion holds
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.