Inclusion of Non–English-Speaking Participants in Pediatric Health Research

Author:

Chen Annie1,Demaestri Sabrina2,Schweiberger Kelsey3,Sidani Jaime4,Wolynn Riley4,Chaves-Gnecco Diego3,Hernandez Raquel5,Rothenberger Scott6,Mickievicz Erin3,Cowden John D.27,Ragavan Maya I.3

Affiliation:

1. University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania

2. Kansas City University, Kansas City, Missouri

3. Division of General Academic Pediatrics, University of Pittsburgh, Pittsburgh, Pennsylvania

4. Department of Behavioral and Community Health Sciences, University of Pittsburgh School of Public Health, Pittsburgh, Pennsylvania

5. Johns Hopkins All Children’s Hospital Institute for Clinical and Translational Research, St. Petersburg, Florida

6. Division of General Internal Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania

7. Division of General Academic Pediatrics, Children’s Mercy Kansas City, Kansas City, Missouri

Abstract

ImportanceThe 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.ObjectiveTo 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 ReviewIn 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).FindingsOf 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 RelevanceThis 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.

Publisher

American Medical Association (AMA)

Subject

Pediatrics, Perinatology and Child Health

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