The Impact of Patient and Family Engagement in Child Health Research: A Scoping Review

Shelley M Vanderhout; Manav Bhalla; Alicia Van; Dean A Fergusson; Beth K Potter; Aliza Karoly; Valentina Ly; Colin Macarthur

doi:10.1016/j.jpeds.2022.09.030

The Impact of Patient and Family Engagement in Child Health Research: A Scoping Review

J Pediatr. 2023 Feb:253:115-128. doi: 10.1016/j.jpeds.2022.09.030. Epub 2022 Sep 27.

Authors

Shelley M Vanderhout¹, Manav Bhalla², Alicia Van³, Dean A Fergusson⁴, Beth K Potter⁵, Aliza Karoly⁶, Valentina Ly⁷, Colin Macarthur⁸

Affiliations

¹ Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada. Electronic address: svanderh@uottawa.ca.
² Health Sciences Centre, University College Dublin School of Medicine, Belfield, Dublin, Ireland.
³ Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
⁴ Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
⁵ School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
⁶ Patient partner.
⁷ University of Ottawa Library Services, Ottawa, Ontario, Canada.
⁸ Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, Ontario, Canada.

PMID: 36179891
DOI: 10.1016/j.jpeds.2022.09.030

Abstract

Objective: To identify impacts of patient and family engagement in child health research on the research process, research teams, and patient and family partners.

Study design: A scoping review was conducted using the MEDLINE, Embase, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, and Web of Science databases. English-language studies were included if they described ≥1 impact of patient and family engagement on child health research (age <18 years), researchers, or patient and family partners. Data were retrieved by 2 independent extractors.

Results: Of the 7688 studies identified, 25 were included in our analysis. Impacts of patient and family engagement were mostly on the research process (n = 24 studies; 96%), 11 (44%) determined impacts on the research team, and 17 (68%) reported impacts on patient and family partners. Less than one-half (n = 11; 44%) had a primary purpose of determining the impact of patient engagement, and no study used a specific evaluation tool.

Conclusions: Patient and family engagement can strengthen the relevance and feasibility of research and empower researchers and patient partners. Measuring and reporting the impact of engagement is rare. Systematic and standardized evaluation of engagement is needed to understand how, when, and why to engage patients and families.

Keywords: patient and public involvement; patient engagement; patient-oriented research.

Publication types

Review
Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Child
Child Health*
Humans
Language
Patient Participation*

Grants and funding

CIHR/Canada