Engaging Children and Families in Pediatric Health Research: a Scoping Review

Overview

Journal Res Involv Engagem

Publisher Biomed Central

Date 2019 Nov 9

PMID 31700676

Citations 35

Authors

Rachel Flynn

Sarah Walton

Shannon D Scott

Affiliations

Soon will be listed here.

Abstract

Aim: Patient engagement (PE) in pediatric health services research is challenging due to contextual factors such as busyness of parenting, work schedules, and diverse family structures. This scoping review seeks to comprehensively map current PE strategies with parents and families across existing published pediatric health research literature.

Methods: We followed Arksey and O'Malley (2005) and Levac et al., (2010) six-stage scoping review process. We conducted the search strategy in Medline, Embase, CINAHL, and Psychinfo databases. Data were extracted from included articles; evidence tables were developed and narrative synthesis was completed.

Results: Of 3925 retrieved records, seventeen articles were included in the review. Patient engagement primarily occurred through strategies such as advisory groups, meetings, focus groups and interviews. Strategies were used to engage patients at various levels, for different purposes (e.g., to inform, participate, consult, involve collaborate and/or lead). These strategies were also used at various stages of the research process. Navigating power differences, time and money were commonly reported challenges. Inconsistent terminology plagued (e.g., stakeholder engagement, consumer participation, patient and public involvement, participatory research) this body of literature and clarity is urgently needed.

Conclusions: This review offers insights into current PE strategies used in pediatric health services research and offers insight for researchers considering employing PE in the future.

Citing Articles

Research quality and dissemination of paediatric randomised controlled trials with and without patient and family engagement: systematic review.

Borkhoff C, Hattangadi N, Nurse K, Kay T, Bhalla M, Mahood Q BMJ Open. 2025; 15(3):e086934.

PMID: 40074267 PMC: 11904335. DOI: 10.1136/bmjopen-2024-086934.

Developing Assessments for Key Stakeholders in Pediatric Congenital Heart Disease: Qualitative Pilot Study to Inform Designing of a Medical Education Toy.

Barbazi N, Shin J, Hiremath G, Lauff C JMIR Form Res. 2025; 9:e63818.

PMID: 39869901 PMC: 11811657. DOI: 10.2196/63818.

Engaging Red River Métis families in Manitoba in the development of child health resources - findings from a qualitative study.

Knisley L, Michelle Driedger S, Hartling L, Chartrand F, Sanguins J, Scott S Res Involv Engagem. 2024; 10(1):128.

PMID: 39696497 PMC: 11653692. DOI: 10.1186/s40900-024-00659-y.

A matrix tool to foster patient engagement in children, adolescents and young adults: report from a multistakeholder workshop.

Cavaller-Bellaubi M, Degraeuwe E, Walle J, Gasthuys E, Prytula A Res Involv Engagem. 2024; 10(1):125.

PMID: 39604985 PMC: 11600809. DOI: 10.1186/s40900-024-00658-z.

Development, implementation, and scalability of the Family Engagement in Research Course: a novel online course for family partners and researchers in neurodevelopmental disability and child health.

Cross A, Soper A, Thomson D, Putterman C, McCauley D, Micsinszki S Res Involv Engagem. 2024; 10(1):80.

PMID: 39103968 PMC: 11302057. DOI: 10.1186/s40900-024-00615-w.

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