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Engaging Children and Young People in Pediatric Palliative Care Research: A Scoping Review Protocol of Patient and

Aima Molati1, Razieh Safarifard1, Emma Nicholson2

  • 1School of Nursing, Psychotherapy and Community Health, Faculty of Science and Health, Dublin City University - Glasnevin Campus, Glasnevin, County Dublin, D09 V209, Ireland.

HRB Open Research
|January 26, 2026
PubMed

Insights

Meaningful engagement of children and young people (CYP) in paediatric palliative care (PPC) research is underdeveloped. This review maps how CYP are involved as active patient and public involvement (PPI) contributors to enhance future research inclusivity and impact.

Area of Science:

  • Paediatric Palliative Care
  • Patient and Public Involvement (PPI)
  • Research Methodology

Background:

  • Meaningful engagement of children and young people (CYP) in paediatric palliative care (PPC) research is currently underdeveloped.
  • Existing literature offers limited insight into the types, levels, and stages of CYP involvement in PPC research.
  • Patient and public involvement (PPI) is recognized for enhancing research relevance, ethics, and impact.

Purpose of the Study:

  • To systematically map the existing literature on CYP involvement as active PPI contributors in PPC research.
  • To identify and categorize reported outcomes, impacts, and ethical, practical, and emotional considerations.
  • To determine factors enabling or hindering meaningful youth participation in PPC research.

Main Methods:

  • Adherence to the Joanna Briggs Institute (JBI) methodology for scoping reviews.
  • Comprehensive literature search across major databases (Embase, CINAHL, PubMed, Scopus, Cochrane Library).
  • Systematic screening and data extraction by independent reviewers, with discrepancies resolved by a third reviewer.

Main Results:

  • A comprehensive synthesis of CYP involvement in PPC research will be provided.
  • Effective engagement practices and common challenges will be illuminated.
  • Critical knowledge gaps in the field will be identified.

Conclusions:

  • Insights will inform the development of inclusive and ethically grounded models for youth involvement in PPC research.
  • This review will guide the creation of developmentally appropriate approaches for partnering with young people in palliative care research.
  • The findings aim to foster a more robust framework for meaningful youth participation in future PPC studies.
Abstract

Keywords:
Children and Young PeoplePaediatric Palliative CareParticipatory researchPatient and Public InvolvementScoping review protocolYouth Engagement

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