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Involving children and young people in paediatric research priority setting: a narrative review

Laura Postma1,2, Malou L Luchtenberg2,3, A A Eduard Verhagen2,4

  • 1Faculty of Medical Sciences, University of Groningen, Groningen, The Netherlands l.postma@umcg.nl.

BMJ Paediatrics Open
|January 16, 2023
PubMed

Insights

The James Lind Alliance (JLA) approach is common for involving children and young people (CYP) in research agendas, but their impact is rarely fully reported. More detailed impact reporting is needed to demonstrate the value of CYP involvement in research.

Area of Science:

  • Paediatric Research
  • Health Services Research
  • Patient and Public Involvement

Background:

  • Involving children and young people (CYP) in research is crucial for developing relevant paediatric research agendas.
  • Understanding the methods and impact of CYP involvement is essential for effective patient and public involvement in research.
  • Existing literature often lacks comprehensive reporting on the impact of involving CYP in research development.

Purpose of the Study:

  • To describe methods used for involving children and young people (CYP) in developing paediatric research agendas.
  • To evaluate the reported impact of involving CYP in research development, categorizing it into focused, diffuse, and research impact.
  • To identify gaps in the evaluation and reporting of CYP involvement in research.

Main Methods:

  • A narrative review of four major databases (MEDLINE, PsycINFO, Web of Science, Google Scholar) was conducted.
  • Studies published between October 2016 and January 2022 involving CYP in research agenda development were included.
  • Included studies were in English and detailed the methods of CYP engagement and any reported impact.

Main Results:

  • Twenty-two studies involving CYP aged 6–25 years were included.
  • The James Lind Alliance (JLA) approach was the most frequently used method (n=16), with limited variation in other methods.
  • Impact reporting was sparse: focused impact in nine studies, diffuse impact in zero studies, and research impact in three studies.

Conclusions:

  • The James Lind Alliance (JLA) approach is the predominant method for involving children and young people (CYP) in research agenda setting.
  • Current evaluations and reporting of the impact of involving CYP in research are incomplete.
  • Enhanced reporting of the impact of CYP involvement is necessary to justify costs and convince researchers of its benefits.
Abstract

Keywords:
Data CollectionEthics

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