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

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 31 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.

Automated summary

This scoping review examined the impacts of patient and family engagement on child health research. It found that engagement has significant effects on the research process, research teams, and patient and family partners. However, the evaluation of these impacts is rare, highlighting the need for systematic and standardized evaluation.