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

TL;DR

This study reviews how children and young people are involved in palliative care research to improve engagement practices.

Contribution

The study provides a systematic map of youth involvement practices in pediatric palliative care research.

Findings

Current literature lacks detailed insights into how children and young people are engaged in PPC research.

The review will identify outcomes, impacts, and barriers to meaningful youth participation.

Findings will inform more inclusive and ethical models for youth involvement in future research.

Abstract

In paediatric palliative care (PPC) research, meaningful engagement of children and young people (CYP) remains underdeveloped. Despite widespread endorsement of patient and public involvement (PPI) for its ability to enhance research relevance, ethics, and overall impact, current studies provide limited insight into how CYP are involved – specifically, the types, levels (e.g., consultation, collaboration, child-led), and stages (from priority setting to dissemination). This scoping review aims to systematically map existing literature on the involvement of CYP (aged 4–24 years) as active PPI contributors in PPC research. We will identify and categorize reported outcomes and impacts, explore ethical, practical, and emotional considerations, and determine the key factors that enable or hinder meaningful youth participation.

The scoping review will adhere to the Joanna Briggs Institute (JBI) methodology. A comprehensive search will be conducted across Embase, CINAHL, PubMed, Scopus, and the Cochrane Library. The search will identify English-language empirical and methodological studies detailing CYP involvement at any stage of the research cycle within PPC. Two independent reviewers will screen titles, abstracts, and full texts, with a third reviewer resolving any discrepancies. Extracted data will be descriptively mapped using a structured extraction table.

This scoping review will provide a comprehensive synthesis of CYP involvement as PPI contributors in PPC research. It will illuminate effective engagement practices, highlight common challenges, and identify critical knowledge gaps. The insights generated from this review will inform the development of more inclusive, ethically grounded, and developmentally appropriate models for involving children and young people as true partners in future palliative care research.