The goal of this study was to partner with community organizations to understand the research experiences of communities who speak languages other than English (LOE).
Methods
We conducted semi-structured qualitative interviews in Spanish, Nepali, Mandarin, French, or Kizigua with LOE community members and community leaders who completed recruitment and data collection. Audio-recordings of the interviews were transcribed and translated. We conducted qualitative coding using a mixed deductive-inductive analysis approach and thematic analyses using three rounds of affinity clustering. This study occurred in partnership with an established community-academic collaboration.
Results
Thirty community members and six community leaders were interviewed. 83% of LOE participants were born outside of the US and most participants (63%) had never participated in a prior research study. Six themes emerged from this work. Many participants did not understand the concept of research, but those that did thought that inclusion of LOE communities is critical for equity. Even when research was understood as a concept, it was often inaccessible to LOE individuals, particularly because of the lack of language services. When LOE participants engaged in research, they did not always understand their participation. Participants thought that improving research trust was essential and recommended partnering with community organizations and disseminating research results to the community.
Conclusion
This study’s results can serve as an important foundation for researchers seeking to include LOE communities in future research to be more inclusive and scientifically rigorous.
YeboahDMcDanielCLionKC. Language matters: why we should reconsider the term “limited english proficiency”. Hosp Pediatr2023; 13(1): e11–e13.
2.
BatalovaJZongJ. Diversity and english proficiency in the United States. In: Migration Information Source. Washington, DC: Migration Policy Institute, 2016.
DeCampLRChoiHDavisMM. Medical home disparities for Latino children by parental language of interview. J Health Care Poor Underserved2011; 22(4): 1151–1166.
5.
CohenALChristakisDA. Primary language of parent is associated with disparities in pediatric preventive care. J Pediatr2006; 148(2): 254–258.
6.
CohenAL. Compliance with guidelines for the medical care of first urinary tract infections in infants: a population-based study. Pediatrics2005; 115(6): 1474–1478.
7.
FloresGTomany-KormanSC. The language spoken at home and disparities in medical and dental health, access to care, and use of services in US children. Pediatrics2008; 121(6): e1703–e1714.
8.
QuanKLynchJ. The high costs of language barriers in medical malpractice. California: National Health Law Program, 2010.
9.
National Institutes of Health. Language access in clear communication. Bethesda, MD: National Institutes of Health.
10.
AllenMP. Language, interpretation, and translation: a Clarification and reference Checklist in service of health literacy and cultural respect. Washington, DC: NAM Perspect, 2020.
11.
Bibbins-DomingoKHelmanADzauVJ. The Imperative for diversity and inclusion in clinical trials and health research participation. JAMA2022; 327(23): 2283–2284.
12.
Department of Health and Human Services. HHS action plan to Reduce racial and ethnic health disparities. Washington, DC: Department of Health and Human Services.
13.
GeorgeSDuranNNorrisK. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. Am J Public Health2014; 104(2): e16–e31.
14.
GlickmanSW. Perspective: the case for research justice: inclusion of patients with limited English proficiency in clinical research. Acad Med2011; 86(3): 389–393.
15.
SheaL. Improving diversity in study participation: patient perspectives on barriers, racial differences and the role of communities. Health Expect2022; 25(4): 1979–1987.
16.
BernierR. Inclusion of non-English-speaking patients in research: a single institution experience. Paediatr Anaesth2018; 28(5): 415–420.
17.
ChenA. Inclusion of non-English-speaking participants in pediatric health research: a review. JAMA Pediatr2023; 177(1): 81–88.
18.
AnwarA. Exclusion of families who speak languages other than english from federally funded pediatric trials. J Pediatr2023; 262: 113597.
19.
LeCroyMN. Barriers to and solutions for representative inclusion across the lifespan and in life course research: the need for structural competency highlighted by the COVID-19 pandemic. J Clin Transl Sci2023; 7(1): e38.
20.
CargillVA, Recruiting, retaining, and maintaining racial and ethnic minority investigators: why we should bother, why we should care. Am J Public Health2009; 99(Suppl 1): S5–S7.
21.
GuilleminM. Do research participants trust researchers or their institution?Journal of Empirical Research on Human Research Ethics2018; 13(3): 285–294.
22.
WilkinsCH, Effective engagement requires trust and being trustworthy. Med Care, 2018; 56(10 Suppl 1): S6–S8.
23.
GriffithDM. Determinants of trustworthiness to conduct medical research: findings from focus groups conducted with racially and ethnically diverse adults. J Gen Intern Med2020; 35(10): 2969–2975.
24.
HendersonC. Shifting the paradigm from participant mistrust to researcher & institutional trustworthiness: a qualitative study of researchers' perspectives on building trustworthiness with Black communities. Community Health Equity Res Policy2024; 44(2): 127–136.
25.
SmithA. Lower trial participation by culturally and linguistically diverse (CALD) cancer patients is largely due to language barriers. Asia Pac J Clin Oncol2018; 14(1): 52–60.
26.
GiulianoAR. Participation of minorities in cancer research: the influence of structural, cultural, and linguistic factors. Ann Epidemiol2000; 10(8 Suppl): S22–S34.
27.
KurtA. Research professionals' perspectives, barriers, and recommendations regarding minority participation in clinical trials. J Racial Ethn Health Disparities2017; 4(6): 1166–1174.
28.
BrelsfordKM. Improving translation and cultural Appropriateness of Spanish-language consent materials for Biobanks. Ethics Hum Res2019; 41(5): 16–27.
29.
BrelsfordKMRuizEBeskowL. Developing informed consent materials for non-English-speaking participants: an analysis of four professional firm translations from English to Spanish. Clin Trials2018; 15(6): 557–566.
30.
McMillanG. IRB policies for obtaining informed consent from non-English-speaking people. Ethics Hum Res2020; 42(3): 21–29.
31.
RhodesSD. Selling the product: strategies to increase recruitment and retention of Spanish-speaking Latinos in biomedical research. J Clin Transl Sci2018; 2(3): 147–155.
32.
KahlkeRM. Generic qualitative approaches: Pitfalls and Benefits of methodological Mixology. Int J Qual Methods2014; 13(1): 37–52.
33.
CrenshawK. Mapping the Margins: intersectionality, identity Politics, and violence against women of color. Stanford Law Rev1991; 43(6): 1241–1299.
34.
SokoloffNJDupontI. Domestic violence at the intersections of race, class, and gender: challenges and contributions to understanding violence against marginalized women in diverse communities. Violence Against Women2005; 11(1): 38–64.
35.
RagavanMI. Exploring the needs and lived experiences of racial and ethnic minority Domestic violence Survivors through community-based participatory research: a systematic review. Trauma Violence Abuse2020; 21(5): 946–963.
36.
GöttgensIOertelt-PrigioneS. The Application of human-centered design approaches in health research and Innovation: a Narrative review of current practices. JMIR Mhealth Uhealth2021; 9(12): e28102.
37.
ChenE. Enhancing community-based participatory research through human-centered design strategies. Health Promot Pract2020; 21(1): 37–48.
38.
HenninkMMKaiserBNMarconiVC. Code saturation versus meaning saturation: how many interviews are enough?Qual Health Res2017; 27(4): 591–608.
39.
PattonMQ. Qualitative research & evaluation methods: integrating theory and practice. Thousand Oaks, CA: Sage publications, 2014.
40.
HsiehHFShannonSE. Three approaches to qualitative content analysis. Qual Health Res2005; 15(9): 1277–1288.
41.
GuestGNameyEMcKennaK. How many focus groups are enough? Building an evidence base for nonprobability sample sizes. Field Methods2016; 29(1): 3–22.
42.
BraunVClarkeV. Using thematic analysis in psychology. Qual Res Psychol2006; 3(2): 77–101.
43.
Owen-SmithAA. Perceptions of barriers to and facilitators of participation in health research among transgender people. Transgender Health2016; 1(1): 187–196.
44.
SchmitzRMTylerKARobinsonBA. To get the word out”: LGBTQ+ Young adults’ motivations for participating in qualitative research studies. J Gay Lesb Soc Serv2019; 31(2): 242–265.
45.
KitchinR. The researched opinions on research: disabled people and disability research. Disabil Soc2000; 15(1): 25–47.
46.
RagavanMICowdenJD. Bilingual and bicultural research teams: unpacking the complexities. Health Equity2020; 4(1): 243–246.
47.
US Department of Health and Human Services Office of Minority Health. National standards for culturally and linguistically appropriate services in health and health care. Washington, DC: US Department of Health and Human Services, 2016.
48.
SchenkerY. Patterns of interpreter use for hospitalized patients with limited English proficiency. J Gen Intern Med2011; 26(7): 712–717.
49.
LeeKC. Resident physicians' use of professional and nonprofessional interpreters: a national survey. JAMA2006; 296(9): 1050–1053.
50.
HsiehE. Not just “getting by”: factors influencing providers' choice of interpreters. J Gen Intern Med2015; 30(1): 75–82.
51.
CowdenJD. Getting past getting by: training culturally and linguistically competent bilingual physicians. J Pediatr2012; 160(6): 891–892.e1.
52.
AndersonMLRikerTWilkinsAM. Application of the truth and reconciliation model to meaningfully engage deaf sign language users in the research process. Cultur Divers Ethnic Minor Psychol2023; 29(1): 15–23.
53.
StevensEM. Mistrust of pediatric Sickle Cell disease clinical trials research. Am J Prev Med2016; 51(Suppl 1): S78–S86.
54.
DreyfusB. Understanding Hispanic/Latino participation in clinical trials and observational studies, and strategies to increase participation: a targeted literature review. J Health Care Poor Underserved2023; 34(1): 399–424.
55.
WallersteinNDuranB. Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am J Public Health2010; 100(Suppl 1): S40–S46.
56.
IsraelBA. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health1998; 19: 173–202.
57.
DostilloL. Reciprocity: saying what We mean and meaning what We say. Mich J Community Serv Learn2012; 19(1): 17–32.
58.
BalazsCLMorello-FroschR. The three Rs: how community-based participatory research Strengthens the rigor, relevance, and reach of science. Environ Justice2013; 6(1): 9–16.
59.
TappH. Use of community-based participatory research in primary care to improve healthcare outcomes and disparities in care. J Comp Eff Res2013; 2(4): 405–419.
60.
HorowitzCR. Effective recruitment of minority populations through community-led strategies. Am J Prev Med2009; 37(6 Suppl 1): S195–200.
61.
VaughnLM. Immigrants as research partners: a review of immigrants in community-based participatory research (CBPR). J Immigr Minor Health2017; 19(6): 1457–1468.
62.
McDavittB. Dissemination as dialogue: building trust and sharing research findings through community engagement. Prev Chronic Dis2016; 13: E38.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
