The impact of patient and family engagement in child health research: a scoping review

SM Vanderhout, M Bhalla, A Van, DA Fergusson… - The Journal of …, 2023 - Elsevier
SM Vanderhout, M Bhalla, A Van, DA Fergusson, BK Potter, A Karoly, V Ly, C Macarthur
The Journal of Pediatrics, 2023Elsevier
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 …
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.
Elsevier
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