Evidence map›Paper›PMID 39223602›Full record

ReviewResearch involvement and engagement2024

Benefits, barriers and recommendations for youth engagement in health research: combining evidence-based and youth perspectives.

Katherine Bailey, Brooke Allemang, Ashley Vandermorris, Sarah Munce, Kristin Cleverley, Cassandra Chisholm, Eva Cohen, Cedar Davidson, Asil El Galad, Dahlia Leibovich and 8 more

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Research involvement and engagement, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 42 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
42citing papers in PubMed, 1 pooled it
–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

42 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Trial
  3. Article
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  6. Review
  7. Article
  8. Article
  9. The Many Faces of Engagement: A Scoping Review of Paediatric Patient and Family Engagement in Clinical Care, Education and Research.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  10. Article
  11. "I liked having my voice heard:" a feasible, rapid approach for codesigning a contraceptive counseling curriculum.Academic medicine : journal of the Association of American Medical Colleges · 2026
    Article
  12. Young Adults' Views on Priority Health Issues and Their Involvement in Shaping Responses: A Qualitative Exploration in South Australia.Health promotion journal of Australia : official journal of Australian Association of Health Promotion Professionals · 2026
    Article
  13. Article
  14. Building the Capacity of Adolescents as Researchers: The Co-Creation of the Health Hive Online Course.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  15. Article
  16. Article
  17. Article
  18. Article
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  20. Review
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

18 authors.

Katherine Bailey *Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Brooke Allemang *Child Health Evaluative Sciences, SickKids Research Institute, Toronto, ON, Canada.
Ashley VandermorrisDepartment of Pediatrics, Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Sarah MunceKITE, Toronto Rehabilitation Institute, University Health Network, Toronto, ON, Canada.
Kristin CleverleyTemerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Cassandra ChisholmFaculty of Medicine and Dentistry, University of Alberta, Edmonton, AB, Canada.
Eva CohenDepartment of Psychology and Neuroscience, Dalhousie University, Halifax, NS, Canada.
Cedar DavidsonNeurosciences and Mental Health, SickKids Research Institute, Toronto, ON, Canada.
Asil El GaladMichael De Groote School of Medicine, McMaster University, Hamilton, ON, Canada.
Dahlia LeibovichMcGill University, Montreal, QC, Canada.
Trinity LowthianDepartment of Health Sciences, University of Ottawa, Ottawa, ON, Canada.
Jeanna PillainayagamMcMaster University, Hamilton, ON, Canada.
Harshini RameshCollaborator, Toronto, ON, Canada.
Anna SamsonPatient Partner, Canadian Arthritis Patient Alliance, Toronto, ON, Canada.
Vjura SenthilnathanKITE, Toronto Rehabilitation Institute, University Health Network, Toronto, ON, Canada.
Paul SiskaCollaborator, Toronto, ON, Canada.
Madison SniderCollaborator, Toronto, ON, Canada.
Alene ToulanyInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada. alene.toulany@sickkids.ca.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundYouth engagement refers to the collaboration between researchers and youth to produce research. Youth engagement in health research has been shown to inform effective interventions aimed at improving health outcomes. However, limited evidence has identified promising practices to meaningfully engage youth. This synthesis aims to describe youth engagement approaches, frameworks, and barriers, as well as provide both evidence-based and youth-generated recommendations for meaningful engagement. MAIN BODY: This review occurred in two stages: 1) a narrative review of existing literature on youth engagement and 2) a Youth Advisory Council (YAC) to review and supplement findings with their perspectives, experiences, and recommendations. The terms 'youth engagement' and 'health research' were searched in Google Scholar, PubMed, Web of Science, Scopus, and PsycINFO. Articles and non-peer reviewed research works related to youth engagement in health research were included, reviewed, and summarized. The YAC met with research team members and in separate youth-only forums to complement the narrative review with their perspectives. Types of youth engagement include participation as research participants, advisors, partners, and co-investigators. Barriers to youth engagement were organized into youth- (e.g., time commitments), researcher- (e.g., attitudes towards youth engagement), organizational- (e.g., inadequate infrastructure to support youth engagement), and system-level (e.g., systemic discrimination and exclusion from research). To enhance youth engagement, recommendations focus on preparing and supporting youth by offering flexible communication approaches, mentorship opportunities, diverse and inclusive recruitment, and ensuring youth understand the commitment and benefits involved.

conclusionsTo harness the potential of youth engagement, researchers need to establish an inclusive and enabling environment that fosters collaboration, trust, and valuable contributions from youth. Future research endeavors should prioritize investigating the dynamics of power-sharing between researchers and youth, assessing the impact of youth engagement on young participants, and youth-specific evaluation frameworks.

Indexed as

Narrative reviewPatient-oriented researchYouth engagement

Identifiers

PMID39223602
PMCPMC11370084

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

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.