The Many Faces of Engagement: A Scoping Review of Paediatric Patient and Family Engagement in Clinical Care, Education and Research.

BACKGROUND

Engagement of paediatric patients, families and caregivers in clinical care, health research and health education is increasingly recognised as essential to improving the quality, relevance and equity of health services. Despite growing interest in its application across clinical care, research and education domains, engagement practices remain poorly connected, inconsistently defined and unevenly implemented. A system-wide understanding of engagement is needed to clarify common principles, highlight gaps in practice and ensure that approaches are aligned across domains-conditions that are necessary for coherence and equity.

OBJECTIVE

To identify the commonalities and distinctions between paediatric patients and family engagement in clinical care, education and research contexts in paediatric healthcare institutions.

METHODS

Following PRISMA-ScR guidelines and the Joanna Briggs Institute framework, a scoping review was conducted across five databases and eleven grey literature sources. Eligible articles involved paediatric patients (0-24 years old), families or caregivers involved in engagement activities related to clinical care, research or education. Three youth and family partners contributed to all review stages, including protocol refinement, screening, extraction, interpretation and manuscript preparation.

RESULTS

Of 16,817 records screened, 113 studies met inclusion criteria. Commonalities emerged across domains, including the predominance of small engagement groups, the frequent use of co-development and feedback roles for partners, and a shared tendency to operate at the Collaborate level of the International Association for Public Participation Spectrum. The application of equity, diversity and inclusion principles in engagement and the impacts of engagement were rarely described across domains. Notable distinctions identified included differences in terminology, evaluation practices and reporting of engagement.

DISCUSSION AND

CONCLUSION

This review identified commonalities and distinctions in how paediatric engagement is conceptualised and enacted across clinical care, research and education, including in partner responsibilities, engagement methods and outcomes. Inconsistent reporting, variable evaluation practices and imprecise terminology reduce comparability across contexts and limit the transferability of engagement practices across the domains of paediatric clinical care, research and education.

PATIENT OR PUBLIC CONTRIBUTION: This review was co-designed and performed in collaboration with three youth and family partners who actively participated across all phases of the research process from conceptualisation, study selection and screening to data analysis and interpretation, and manuscript preparation.