Evidence map›Paper›PMID 40910072›Full record

ArticleHRB open research2025

Protocol for an umbrella review of the state-of-science on public and patient involvement in health and social care research with children, young people and families.

Shauna Malone Gill, Orla Hayes, Yvonne Corcoran, Anna Gunning, Veronica Swallow, Emma Nicholson, Begonya Nafria Escalera, Amanda Drury, Edel Murphy, Arthur Templeman-Lilley and 1 more

Abstract read
In one paragraph

Article in HRB open research, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Review
  4. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Shauna Malone GillSchool of Nursing, Psychotherapy and Community Health, Faculty of Science and Health, Dublin City University - Glasnevin Campus, Glasnevin, County Dublin, D09 V209, Ireland.ORCID https://orcid.org/0000-0002-7567-7935
Orla HayesSchool of Nursing, Psychotherapy and Community Health, Faculty of Science and Health, Dublin City University - Glasnevin Campus, Glasnevin, County Dublin, D09 V209, Ireland.ORCID https://orcid.org/0009-0008-4041-153X
Yvonne CorcoranSchool of Nursing, Psychotherapy and Community Health, Faculty of Science and Health, Dublin City University - Glasnevin Campus, Glasnevin, County Dublin, D09 V209, Ireland.
Anna GunningChildren in Hospital Ireland, Suite 113 5, 4-5 Burton Hall Rd, Children in Hospital Ireland, Sandyford, Dublin 18, D18 A094, Ireland.
Veronica SwallowDepartment of Nursing and Midwifery, Sheffield Hallam University, Sheffield, England, S1 1WB, UK.ORCID https://orcid.org/0000-0001-8504-4704
Emma NicholsonSchool of Psychology, Dublin City University - Glasnevin Campus, Glasnevin, County Dublin, D09 V209, Ireland.
Begonya Nafria EscaleraPatient Engagement in Research Department, Institut de Recerca Sant Joan de Déu, Santa Rosa 39-56, 08950, Esplugues de Llobregat, Spain.
Amanda DrurySchool of Nursing, Psychotherapy and Community Health, Faculty of Science and Health, Dublin City University - Glasnevin Campus, Glasnevin, County Dublin, D09 V209, Ireland.ORCID https://orcid.org/0000-0002-1720-5673
Edel MurphyPublic and Patient Involvement (PPI) Ignite Network, Institute for Lifecourse and Society, University of Galway, Galway, County Galway, H91 C7DK, Ireland.
Arthur Templeman-LilleyIndependent Lead Advisor, Wales, UK.
Veronica LambertSchool of Nursing, Psychotherapy and Community Health, Faculty of Science and Health, Dublin City University - Glasnevin Campus, Glasnevin, County Dublin, D09 V209, Ireland.ORCID https://orcid.org/0000-0003-4396-5462

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: Public and Patient Involvement (PPI) refers to the active collaboration of patients and the public in health and social care research decision-making, enhancing research success, cost-effectiveness, and impact. Children, young people, and their families bring unique lived experiences to PPI in research, relating to others with similar experiences, while factors like age, cognitive maturation, and developmental stage create differences between researchers and patients or the public. Collaboration with children, young people, and their families should be guided by specific project context and a strong evidence base. However, existing systematic reviews reveal inconsistencies in reporting and a lack of standardised methods for these groups, limiting effective PPI implementation. This protocol details methods for an umbrella review to identify the current state-of-science and future priorities for collaborating with children, young people and families in health and social care research. Methods: The protocol was developed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA-P) guidelines, which will also direct the reporting of findings. The Joanna Briggs Institute's methodology for conducting umbrella reviews will be adhered to throughout. MEDLINE, CINAHL, EMBASE, PsycINFO, Cochrane, DARE, JBI Evidence Synthesis, PROSPERO, grey literature databases, targeted international networks, and the Google search engine will be searched for systematic reviews on PPI with children, young people, and families in health and social care research. Two reviewers will independently conduct eligibility screening, data extraction, and quality appraisal. Conclusions: This umbrella review will provide critical insights into the state-of-science of PPI with children, young people and families in health and social care research. The synthesis of findings could yield important information for researchers and other stakeholders conducting health and social care research in collaboration with children, young people and families by highlighting key patterns, gaps, and recommendations to guide future PPI practices, policies, and research.RegistrationThis umbrella review was registered in PROSPERO, the International Prospective Register of Systematic Reviews (Prospero registration number: CRD42024608935, registered 14th of November 2024).

Indexed as

adolescentchildengagementfamilyhealth and social care researchoverview of reviewsPatient and public involvementreview of reviews

Identifiers

PMID40910072
PMCPMC12405837

What OpenQuestion holds

Textmetadata
LicenceCC BY
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Registered trials

None linked

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.