Patient and family engagement in adult and paediatric critical care research: A scoping review.

OBJECTIVES

Patient and family engagement (PFE) in research can enhance the relevance of research undertaken, methodology used, and interventions designed. The practice and extent of PFE undertaken in critical care research is broad and relatively undefined. The aim of this review was to identify the level of PFE in critical care research, according to the International Association for Public Participation Spectrum (IAP2) tool, including where it occurred in the research lifecycle and the impact PFE had on research undertaken.

REVIEW

METHODS

We conducted a scoping review to synthesise the field and provide recommendations to improve reporting of PFE. This scoping review was registered on the International Platform of Registered Systematic Review and Meta-Analysis Protocols and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines. We limited the search to 2016-2025 and searched five databases: OVID Medline, OVID Embase, PubMed, CINHAL, and Web of Science. Studies in critical care that reported PFE with one or more levels of the IAP2 tool were included in this review.

RESULTS

Forty-seven studies met inclusion criteria. All studies engaged patients and families at the level of "consult" on the IAP2 tool, and few studies (13/47, [28%]) included PFE at all levels of the IAP2 tool. PFE occurred in the initial stages of the research lifecycle for all studies. Only 10 studies engaged patients and families at all stages of the research lifecycle (10/47 [21%]). Nineteen studies (19/47, 40%) reported at least one impact on the research as a result of PFE.

CONCLUSIONS

This review found that studies typically engaged patients and families to "consult". Most engagement activities occurred during the design phase of the research lifecycle. Studies with higher levels of engagement led to greater involvement across the research lifecycle and were more likely to report an impact on the research.