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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
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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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.

References
1.
The United States Census Bureau. Detailed languages spoken at home and ability to speak English for the population 5 years and over: 2009-2013. Updated December 16, 2021. Accessed July 12, 2022. https://www.census.gov/data/tables/2013/demo/2009-2013-lang-tables.html
2.
Flores  G , Tomany-Korman  SC .  The language spoken at home and disparities in medical and dental health, access to care, and use of services in US children.   Pediatrics. 2008;121(6):e1703-e1714. doi:10.1542/peds.2007-2906 PubMedGoogle ScholarCrossref
3.
Flores  G , Abreu  M , Olivar  MA , Kastner  B .  Access barriers to health care for Latino children.   Arch Pediatr Adolesc Med. 1998;152(11):1119-1125. doi:10.1001/archpedi.152.11.1119 PubMedGoogle ScholarCrossref
4.
Frayne  SM , Burns  RB , Hardt  EJ , Rosen  AK , Moskowitz  MA .  The exclusion of non-English-speaking persons from research.   J Gen Intern Med. 1996;11(1):39-43. doi:10.1007/BF02603484 PubMedGoogle ScholarCrossref
5.
Flores  G , Abreu  M , Barone  CP , Bachur  R , Lin  H .  Errors of medical interpretation and their potential clinical consequences: a comparison of professional versus ad hoc versus no interpreters.   Ann Emerg Med. 2012;60(5):545-553. doi:10.1016/j.annemergmed.2012.01.025 PubMedGoogle ScholarCrossref
6.
Berdahl  TA , Kirby  JB .  Patient-provider communication disparities by limited English proficiency (LEP): trends from the US Medical Expenditure Panel Survey, 2006-2015.   J Gen Intern Med. 2019;34(8):1434-1440. doi:10.1007/s11606-018-4757-3 PubMedGoogle ScholarCrossref
7.
Batalova  J , Zong  J . Language diversity and English proficiency in the United States. Migration Information Source. November 11, 2016. Accessed July 12, 2022. https://www.migrationpolicy.org/article/language-diversity-and-english-proficiency-united-states-2015
8.
Woods T, Hanson D. Over half of children of immigrants are bilingual. Urban Wire. Urban Institute. October 18, 2016. Accessed May 10, 2022. https://www.urban.org/urban-wire/over-half-children-immigrants-are-bilingual#:~:text=Nearly%206%20in%2010%20have%20a%20parent%20who
9.
Cohen  AL , Christakis  DA .  Primary language of parent is associated with disparities in pediatric preventive care.   J Pediatr. 2006;148(2):254-258. doi:10.1016/j.jpeds.2005.10.046 PubMedGoogle ScholarCrossref
10.
Cohen  AL , Rivara  FP , Davis  R , Christakis  DA .  Compliance with guidelines for the medical care of first urinary tract infections in infants: a population-based study.   Pediatrics. 2005;115(6):1474-1478. doi:10.1542/peds.2004-1559 PubMedGoogle ScholarCrossref
11.
Cohen  AL , Rivara  F , Marcuse  EK , McPhillips  H , Davis  R .  Are language barriers associated with serious medical events in hospitalized pediatric patients?   Pediatrics. 2005;116(3):575-579. doi:10.1542/peds.2005-0521 PubMedGoogle ScholarCrossref
12.
Khan  A , Yin  HS , Brach  C ,  et al; Patient and Family Centered I-PASS Health Literacy Subcommittee.  Association between parent comfort with English and adverse events among hospitalized children.   JAMA Pediatr. 2020;174(12):e203215. doi:10.1001/jamapediatrics.2020.3215 PubMedGoogle ScholarCrossref
13.
Yin  HS , Johnson  M , Mendelsohn  AL , Abrams  MA , Sanders  LM , Dreyer  BP .  The health literacy of parents in the United States: a nationally representative study.   Pediatrics. 2009;124(suppl 3):S289-S298. doi:10.1542/peds.2009-1162E PubMedGoogle ScholarCrossref
14.
Yin  HS , Mendelsohn  AL , Wolf  MS ,  et al.  Parents’ medication administration errors: role of dosing instruments and health literacy.   Arch Pediatr Adolesc Med. 2010;164(2):181-186. doi:10.1001/archpediatrics.2009.269 PubMedGoogle ScholarCrossref
15.
Anand  KJ , Sepanski  RJ , Giles  K , Shah  SH , Juarez  PD .  Pediatric intensive care unit mortality among Latino children before and after a multilevel health care delivery intervention.   JAMA Pediatr. 2015;169(4):383-390. doi:10.1001/jamapediatrics.2014.3789 PubMedGoogle ScholarCrossref
16.
DeCamp  LR , Choi  H , Davis  MM .  Medical home disparities for Latino children by parental language of interview.   J Health Care Poor Underserved. 2011;22(4):1151-1166. doi:10.1353/hpu.2011.0113 PubMedGoogle ScholarCrossref
17.
Kibakaya  EC , Oyeku  SO .  Cultural humility: a critical step in achieving health equity.   Pediatrics. 2022;149(2):e2021052883. doi:10.1542/peds.2021-052883 PubMedGoogle ScholarCrossref
18.
Okoniewski  W , Sundaram  M , Chaves-Gnecco  D , McAnany  K , Cowden  JD , Ragavan  M .  Culturally sensitive interventions in pediatric primary care settings: a systematic review.   Pediatrics. 2022;149(2):e2021052162. doi:10.1542/peds.2021-052162 PubMedGoogle ScholarCrossref
19.
Bustillos  D .  Limited English proficiency and disparities in clinical research.   J Law Med Ethics. 2009;37(1):28-37. doi:10.1111/j.1748-720X.2009.00348.x PubMedGoogle ScholarCrossref
20.
Alhalel  J , Francone  N , Post  S , O'Brian  CA , Simon  MA . How should representation of subjects with LEP become more equitable in clinical trials? AMA J Ethics. 2022;24(4):E319-E325. doi:10.1001/amajethics.2022.319
21.
Glickman  SW , Ndubuizu  A , Weinfurt  KP ,  et al.  Perspective: the case for research justice: inclusion of patients with limited English proficiency in clinical research.   Acad Med. 2011;86(3):389-393. doi:10.1097/ACM.0b013e318208289a PubMedGoogle ScholarCrossref
22.
Rees  CA , Stewart  AM , Mehta  S ,  et al.  Reporting of participant race and ethnicity in published US pediatric clinical trials from 2011 to 2020.   JAMA Pediatr. 2022;176(5):e220142. doi:10.1001/jamapediatrics.2022.0142 PubMedGoogle ScholarCrossref
23.
George  S , Duran  N , Norris  K .  A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.   Am J Public Health. 2014;104(2):e16-e31. doi:10.2105/AJPH.2013.301706 PubMedGoogle ScholarCrossref
24.
Griffith  DM , Jaeger  EC , Bergner  EM , Stallings  S , Wilkins  CH .  Determinants of trustworthiness to conduct medical research: findings from focus groups conducted with racially and ethnically diverse adults.   J Gen Intern Med. 2020;35(10):2969-2975. doi:10.1007/s11606-020-05868-1 PubMedGoogle ScholarCrossref
25.
Warren  RC , Forrow  L , Hodge  DA  Sr , Truog  RD .  Trustworthiness before trust—Covid-19 vaccine trials and the Black community.   N Engl J Med. 2020;383(22):e121. doi:10.1056/NEJMp2030033 PubMedGoogle ScholarCrossref
26.
National Institutes of Health, US Department of Health and Human Services. Language access in clear communication. Accessed July 12, 2022. https://www.nih.gov/institutes-nih/nih-office-director/office-communications-public-liaison/clear-communication/language-access-clear-communication
27.
Allen  MP , Johnson  RE , McClave  EZ , Alvarado-Little  W . Language, interpretation, and translation: a clarification and reference checklist in service of health literacy and cultural respect. NAM Perspect. 2020;2020:doi:10.31478/202002c. doi:10.31478/202002c
28.
US Department of Health and Human Services. HHS Action Plan to Reduce Racial and Ethnic Health Disparities: a nation free of disparities in health and health care. Accessed July 12, 2022. https://minorityhealth.hhs.gov/assets/pdf/hhs/HHS_Plan_complete.pdf
29.
Bernier  R , Halpin  E , Staffa  SJ , Benson  L , DiNardo  JA , Nasr  VG .  Inclusion of non-English-speaking patients in research: a single institution experience.   Paediatr Anaesth. 2018;28(5):415-420. doi:10.1111/pan.13363 PubMedGoogle ScholarCrossref
30.
Brodeur  M , Herrick  J , Guardioloa  J , Richman  P .  Exclusion of non-English speakers in published emergency medicine research—a comparison of 2004 and 2014.   Acta Inform Med. 2017;25(2):112-115. doi:10.5455/aim.2017.25.112-115 PubMedGoogle ScholarCrossref
31.
Ragavan  MI , Cowden  JD . The complexities of assessing language and interpreter preferences in pediatrics. Health Equity. 2018;2(1):70-73.
32.
Brelsford  KM , Ruiz  E , Beskow  L .  Developing informed consent materials for non-English-speaking participants: an analysis of four professional firm translations from English to Spanish.   Clin Trials. 2018;15(6):557-566. doi:10.1177/1740774518801591 PubMedGoogle ScholarCrossref
33.
Fishman  M , Williams  WA  II , Goodman  DM , Ross  LF .  Gender differences in the authorship of original research in pediatric journals, 2001-2016.   J Pediatr. 2017;191:244-249.e1. doi:10.1016/j.jpeds.2017.08.044 PubMedGoogle ScholarCrossref
34.
Silver  JK , Poorman  JA , Reilly  JM , Spector  ND , Goldstein  R , Zafonte  RD . Assessment of women physicians among authors of perspective-type articles published in high-impact pediatric journals. JAMA Netw Open. 2018;1(3):e180802.
35.
National Geographic Society. United States regions. January 3, 2012. Updated August 26, 2022. Accessed July 12, 2022. https://www.nationalgeographic.org/maps/united-states-regions/
36.
Kurt  A , Semler  L , Meyers  M , Porter  BG , Jacoby  JL , Stello  B .  Research professionals’ perspectives, barriers, and recommendations regarding minority participation in clinical trials.   J Racial Ethn Health Disparities. 2017;4(6):1166-1174. doi:10.1007/s40615-016-0322-0 PubMedGoogle ScholarCrossref
37.
Smith  A , Agar  M , Delaney  G ,  et al.  Lower trial participation by culturally and linguistically diverse (CALD) cancer patients is largely due to language barriers.   Asia Pac J Clin Oncol. 2018;14(1):52-60. doi:10.1111/ajco.12818 PubMedGoogle ScholarCrossref
38.
Giuliano  AR , Mokuau  N , Hughes  C ,  et al; Ho RCS.  Participation of minorities in cancer research: the influence of structural, cultural, and linguistic factors.   Ann Epidemiol. 2000;10(8)(suppl):S22-S34. doi:10.1016/S1047-2797(00)00195-2 PubMedGoogle ScholarCrossref
39.
McMillan  G .  IRB policies for obtaining informed consent from non-English-speaking people.   Ethics Hum Res. 2020;42(3):21-29. doi:10.1002/eahr.500050 PubMedGoogle ScholarCrossref
40.
Kaiser Permanente. Kaiser Permanente trains nonprofit health care providers to provide bilingual services. 3BL Media, Inc. August 28, 2012. Accessed May 11, 2022. https://www.3blmedia.com/news/kaiser-permanente-trains-nonprofit-health-care-providers-provide-bilingual-services
41.
Ragavan  MI , Cowden  JD . Bilingual and bicultural research teams: unpacking the complexities. Health Equity. 2020;4(1):243-246.
42.
Paradise  RK , Hatch  M , Quessa  A , Gargano  F , Khaliif  M , Costa  V .  Reducing the use of ad hoc interpreters at a safety-net health care system.   Jt Comm J Qual Patient Saf. 2019;45(6):397-405. doi:10.1016/j.jcjq.2019.01.004 PubMedGoogle ScholarCrossref
43.
Juckett  G , Unger  K .  Appropriate use of medical interpreters.   Am Fam Physician. 2014;90(7):476-480.PubMedGoogle Scholar
44.
US Department of Health and Human Services. National standards for culturally and linguistically appropriate services in health and health care. April 2013. Accessed July 12, 2022. https://thinkculturalhealth.hhs.gov/CLAS/
45.
National Institutes of Health, US Department of Health and Human Services. Grants & Funding: NIH policy and guidelines on the inclusion of women and minorities as subjects in clinical research. Updated December 6, 2017. Accessed July 12, 2022. https://grants.nih.gov/policy/inclusion/women-and-minorities/guidelines.htm
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