Mapping Patient and Public Involvement in Pediatric Palliative Care: When, Where and How

Abstract

Introduction

Paediatric palliative care (PPC) is a medical subspecialty that aims to improve the quality of life for children with life-limiting or life-threatening illnesses. PPC focuses on the needs of patients and families and is rooted in communication and collaboration between healthcare teams, children, and their relatives to align medical interventions with family goals and values. Given the specific features of this field, patient and public involvement (PPI) is expected to significantly improve the relevance of systematic reviews on this topic by identifying outcomes that are important to patients and their families, and by making results more accessible to stakeholders.

Objectives

Quantify and describe PPI in PPC reviews.

Methods

A librarian performed a systematic search, with the objective of mapping PPI in PPC reviews, on PubMed, EMBASE and Cochrane databases, retrieving systematic reviews from inception to March 2026. We used a free-text search and thesaurus descriptors search (MeSH -Pubmed and Emtree-Embase) to select papers following a PICO model. Then we managed the retrieved results using a specific tool. Following this preliminary data, we are conducting an umbrella review to further analyze the topic.

Results

Our systematic literature search retrieved 731 references, reduced to 581 after deduplication. Three independent reviewers screened the references and, after consensus, 123 satisfied inclusion criteria; three full texts couldn’t be retrieved. Nine over 120 papers benefited from PPI at various stages of the review, mostly during planning and dissemination. These reviews were all from European countries and were published in the last decade. Some of the reviews without PPI explored technical and management aspects. A big majority of them were focused on patients’ and families’ feelings and needs.

Conclusion

PPI involvement in PPC reviews is still limited in numbers and kind of contribution, with differences between countries. A bigger work on the topic is going on with the involvement of personnel of a PPC team and representatives of PPC parents’ association to better quantify and describe PPI in PPC reviews, while evaluating its effects on enhancing the relevance, quality, and dissemination of research. Geographical and cultural differences in the topic will also be explored.