Involvement of children and young people in the conduct of health research: A rapid umbrella review.

Background: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in rese...

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Publicado en:Health Expectations Vol. 27; no. 3; pp. 1 - 19
Autores principales: Wyatt, Katherine A., Bell, Jessica, Cooper, Jason, Constable, Leanne, Siero, William, Pozo Jeria, Carla, Darling, Simone, Smith, Rachel, Hughes, Elizabeth K.
Formato: research systematic review tables/charts Journal Article
Publicado: Wiley-Blackwell Jun2024
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Jun2024
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        atl: Involvement of children and young people in the conduct of health research: A rapid umbrella review.
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          Wyatt, Katherine A.
          Bell, Jessica
          Cooper, Jason
          Constable, Leanne
          Siero, William
          Pozo Jeria, Carla
          Darling, Simone
          Smith, Rachel
          Hughes, Elizabeth K.
        affil: Murdoch Children's Research Institute, Parkville Victoria,, Australia
      sug:
        subj:
          Research Subject Recruitment Evaluation
          Research, Medical
          Outcomes (Health Care)
          Human
          Systematic Review
          Medline
          Embase
          PubMed
          Thematic Analysis
          North America
          United Kingdom
          Focus Groups
          Interviews
          Questionnaires
          Drawing
          Photography
          Creativeness
          Child
          Young Adult
          Adolescence
          Parents
          Caregivers
          Writing
          Mentorship
          Bias (Research)
          Communication
          Trust
          Confidence
          Funding Source
          Checklists
          Clinical Assessment Tools
          Child: 6-12 years
          Adolescent: 13-18 years
      ab: Background: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. Aims: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. Methods: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. Results: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts‐based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. Conclusion: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. Patient/Public Contribution: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions.
      pubtype: Academic Journal
      doctype:
        research
        systematic review
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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