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Pediatrics

Inclusion of Non–English-Speaking Participants in Pediatric Health ResearchA Review

To identify the key insights or developments described in this article
1 Credit CME
JAMA Pediatrics
Published Online: October 31, 2022
Review
Annie Chen, BS1;
Sabrina Demaestri, BA2;
Kelsey Schweiberger, MD3;
Jaime Sidani, PhD, MPH4;
Riley Wolynn, BS4;
Diego Chaves-Gnecco, MD, MPH3;
Raquel Hernandez, MD, MPH5;
Scott Rothenberger, PhD6;
Erin Mickievicz, BA3;
John D. Cowden, MD, MPH2,7;
Maya I. Ragavan, MD, MPH, MS3
Author Affiliations
  • 1University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania
  • 2Kansas City University, Kansas City, Missouri
  • 3Division of General Academic Pediatrics, University of Pittsburgh, Pittsburgh, Pennsylvania
  • 4Department of Behavioral and Community Health Sciences, University of Pittsburgh School of Public Health, Pittsburgh, Pennsylvania
  • 5Johns Hopkins All Children’s Hospital Institute for Clinical and Translational Research, St. Petersburg, Florida
  • 6Division of General Internal Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania
  • 7Division of General Academic Pediatrics, Children’s Mercy Kansas City, Kansas City, Missouri
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Key Points

Question  How frequently are non–English-speaking (NES) participants included in pediatric research, and what methodological details are provided about communication with NES participants?

Findings  In this review of 5008 research articles in 3 pediatric journals from 2012 to 2021, 9% of NES participants were included. Spanish was the most commonly included language, and 22% and 29% of articles provided specific details about oral and written communication with NES participants, respectively.

Meaning  This review found that NES communities were underrepresented in pediatric health research from 2012 to 2021, suggesting that work is needed to increase NES representation, ensure best practices in oral and written communication, and promote language and health equity.

Abstract

Importance  The inclusion of non–English-speaking (NES) participants in pediatric research is an essential step to improving health equity for these populations. Although some studies have shown lack of progress in NES research participation in the past decade, few have examined NES inclusivity in pediatric research or details about the practices that researchers have used to communicate with NES participants.

Objective  To assess how frequently NES families were included in pediatric research, how rates of inclusion changed over time, what languages were included, and methodological details about oral and written communication with NES participants.

Evidence Review  In this review, all original investigation articles published in JAMA Pediatrics, Pediatrics, and The Journal of Pediatrics between January 2012 and November 2021 were screened. Eligible articles, which included those based in the US and with human participants, were reviewed to determine whether they included or excluded NES participants or whether or not there was specific mention of language. A second-round review was conducted on the subset of articles that included NES participants to determine methodological details (eg, languages included, type of study, region where the study was located, and oral and written communication practices with NES participants).

Findings  Of the 8142 articles screened, 5008 (62%) met inclusion criteria; of these, 469 (9%) included NES participants. The most common language was Spanish (350 [75%]); 145 articles (31%) reported non-English or other language without specification. A total of 230 articles (49%) reported the number of NES participants, and 61 (13%) specified the methods used to determine whether participants preferred a language other than English. In all, 101 (22%) and 136 (29%) articles specified how oral and written communication occurred with NES participants, respectively.

Conclusions and Relevance  This review of 3 pediatric journals provides preliminary evidence suggesting exclusion of NES communities from pediatric research from 2012 to 2021 and highlights an opportunity to provide more methodological detail about communication with NES participants. Best practices for improving inclusivity of NES participants are needed to guide researchers toward improved methods and more relevant results.

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Health Disparities Pediatrics Health Care Quality Equity, Diversity, and Inclusion
Article Information

Accepted for Publication: August 1, 2022.

Published Online: October 31, 2022. doi:10.1001/jamapediatrics.2022.3828

Corresponding Author: Maya Ragavan, MD, MPH, MS, Division of General Academic Pediatrics, University of Pittsburgh, 3414 Fifth Ave, Pittsburgh, PA 15213 (ragavanm@chp.edu).

Author Contributions: Dr Ragavan had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Chen, Sidani, Chaves-Gnecco, Hernandez, Cowden, Ragavan.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Chen, Sidani, Chaves-Gnecco, Rothenberger, Cowden, Ragavan.

Critical revision of the manuscript for important intellectual content: Chen, Demaestri, Schweiberger, Sidani, Wolynn, Chaves-Gnecco, Hernandez, Mickievicz, Cowden, Ragavan.

Statistical analysis: Chen, Schweiberger, Rothenberger, Mickievicz.

Administrative, technical, or material support: Schweiberger, Wolynn, Hernandez, Cowden.

Supervision: Chaves-Gnecco, Cowden, Ragavan.

Conflict of Interest Disclosures: Dr Schweiberger reported receiving funding from the National Institutes of Health (NIH) and the Health Resources and Services Administration outside the submitted work. Dr Sidani reported receiving grants from the American Heart Association, the Richard King Mellon Foundation, and the NIH outside the submitted work. Dr Hernandez reported receiving funding from the NIH outside the submitted work. Dr Cowden reported receiving funding from the REACH Healthcare Foundation, Health Forward Foundation, and Government Employees Health Insurance Foundation outside the submitted work. Dr Ragavan reported receiving funding from the NIH and the Allegheny County Health Department outside the submitted work. No other disclosures were reported.

Funding/Support: Dr Schweiberger was supported by Primary Care Research Award T32HP22240 from the Health Resources and Services Administration. Dr Sidani was supported by PittCATS K12 grant K12DA050607 from the University of Pittsburgh and by grant 20CDA352260151 from the American Heart Association. Dr Ragavan was supported by KL2 grant TR001856 from the National Center for Advancing Translational Sciences, University of Pittsburgh.

Role of the Funder/Sponsor: The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

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