¿No Hay Racismo?: application of the levels of racism framework to Latinx perspectives on barriers to health and wellbeing

Abstract

Background

The purpose of this study is to increase understanding of the forms of systemic racism experienced by Latinx communities in North Carolina during the COVID-19 pandemic as identified by Latinx community health workers (CHWs) and community-based organization (CBO) leaders.

Methods

We held three focus groups in July 2022 (N = 16) with CHWs and CBO leaders in Spanish to discuss policy and community interventions that improved access to resources during the COVID-19 pandemic; policy or community interventions needed to improve care of Latinx communities; and lessons learned to improve the health of Latinx communities in the future. We performed directed and summative qualitative content analysis of the data in the original language using the Levels of Racism Framework by Dr. Camara Jones to identify examples of implicitly and explicitly discussed forms of systemic racism.

Results

Latinx CHWs and CBO leaders implicitly discussed numerous examples of all levels of racism when seeking and receiving health services, such as lack of resources for undocumented individuals and negative interactions with non-Latinx individuals, but did not explicitly name racism. Themes related to institutionalized racism included: differential access to resources due to language barriers; uninsured or undocumented status; exclusionary policies not accounting for cultural or socioeconomic differences; lack of action despite need; and difficulties obtaining sustainable funding. Themes related to personally-mediated racism included: lack of cultural awareness or humility; fear-inciting misinformation targeting Latinx populations; and negative interactions with non-Latinx individuals, organizations, or institutions. Themes related to internalized racism included: fear of seeking information or medical care; resignation or hopelessness; and competition among Latinx CBOs. Similarly, CHWs and CBO leaders discussed several interventions with systems-level impact without explicitly mentioning policy or policy change.

Conclusion

Our research demonstrates community-identified examples of racism and confirms that Latinx populations often do not name racism explicitly. Such language gaps limit the ability of CHWs and CBOs to highlight injustices and limit the ability of communities to advocate for themselves. Although generally COVID-19 focused, themes identified represent long-standing, systemic barriers affecting Latinx communities. It is therefore critical that public and private policymakers consider these language gaps and engage with Latinx communities to develop community-informed anti-racist policies to sustainably reduce forms of racism experienced by this unique population.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12889-024-19587-3.

Introduction

Background

The focus on racism as a public health crisis has spiked in the last three years. This focus has been evident in journals, conferences, and funding opportunities. Despite decades of research describing the detrimental effects of racism on health among marginalized and minoritized populations, there has been limited progress in addressing racism as a root cause of health inequities [1–3].

The constant evolution of health equity language may contribute to this lack of progress in addressing racism. For example, there are numerous definitions of structural and systemic racism [4–6]. In academic research, social media, and everyday vernacular alike, the term racism is often conflated with discrimination and race and ethnicity are often used interchangeably. There is also a lack of conceptual clarity in terms related to racism when applied to an ethnicity, such as Latinx/e/o/a/Hispanic populations. These differences in terminology may impact the measurement of racism and subsequent interventions designed based on those measurements. Yet, few studies exist evaluating community understanding of these differences in terminology. In this study, we use the term systemic racism as defined by Braveman et al. [4] to comprehensively refer to all forms of racism. Braveman et al. [4] defines systemic racism as intentional or unintentional unfair treatment of a group of people based on unfounded attitudes and beliefs, which is embedded in and throughout systems, and includes structural or institutionalized racism. We then use Dr. Camara Jones’ [7] definitions for each level of racism – institutionalized, personally-mediated, and internalized – as summarized in Table 1.

Table 1.

Levels of racism framework definitions developed by Dr. Camara Jones

Institutionalized Racism	“differential access to goods, services, and opportunities in society by race… It is structural… [and] is often evident as inaction in the face of need”
Personally-Mediated Racism	“prejudice and discrimination, where prejudice means differential assumptions about the abilities, motives, and intentions of others according to their race, and discrimination means differential actions toward others according to their race. Personally-mediated racism can be intentional as well as unintentional, and it includes acts of commission as well as acts of omission.”
Internalized Racism	“acceptance by members of the stigmatized races of negative messages about their own abilities and intrinsic worth. It is characterized by their not believing in others who look like them, and not believing in themselves. It involves accepting limitations to one’s own full humanity, including one’s spectrum of dreams, one’s right to self-determination, and one’s range of allowable self-expression”

Language reflects our collective understanding of and agreement on what is socially appropriate. Given the ever-changing landscape of appropriate terminology, researchers and advocates are frequently unsure of which terms to use. The time lag between research, mass media dissemination, and colloquial understanding creates further confusion at the community level. A poignant example of misalignment between the language used by researchers and preferred by community members is the use of Latinx or Latine over Latino/a or Hispanic. This is a source of confusion for all people, not only community members or researchers [8]. Although the term Latinx is meant to be more inclusive of diverse gender identities, not all community members are comfortable using or being labeled as Latinx [9, 10]. Additionally, a newer term, LHS + , is emerging in the literature to refer to all individuals that identify as Latinx/e/o/a, Hispanic, or of Spanish origin [11]. In prior studies, our team identified la comunidad Latina as the preferred term of community members actively engaged with a multisector coalition in North Carolina – the Latinx Advocacy Team and Interdisciplinary Network for COVID-19 (LATIN-19) [12]. Therefore, we will continue to use la comunidad Latina to refer to Latinx/e/o/a/Hispanic individuals in North Carolina and use the term Latinx to refer to all Latinx/e/o/a/Hispanic individuals more broadly.

Discussion of race and racism in the U.S. has traditionally focused on Black and White populations, with separation of Latinx individuals into one ethnicity category. The term Latinx is broad as it encompasses people from over 30 countries with different social constructions of race. As a result, most current health equity measures in policy and public health in the U.S. focus on stratification of population outcomes by race/ethnicity into the traditional Office of Management and Budget (OMB) Standards for the Classification of Federal Data on Race and Ethnicity categories. These include Non-Hispanic White, Non-Hispanic Black, and Hispanic/Latino, with little focus on the differences in outcomes within Latinx subgroups, such as self-identified White Latinx, Black Latinx, and Other Latinx. Furthermore, a recent survey by the Pew Research Center demonstrated that Latinx adults were more likely than White or Black adults to say that the 2020 census questions do not reflect their identity well [13].

Thus, OMB-based categorizations do not adequately capture the heterogeneity of Latinx identities and assumptions about genetic ancestry based on broad categorizations can negatively impact health outcomes [14]. Additionally, little is known about the factors that affect self-identified race/ethnicity. For example, Latinx individuals that have been in the U.S. for more generations identify themselves differently than those that more recently immigrated to the U.S [15]. Factors that lead to increased discrimination, such as skin color, language, and immigration experience, may also affect self-reported identities [15]. As a result, Latinx individuals prefer to self-identify using country of origin, rather than the pan-ethnic categorization of Latino/Hispanic [15].

Racialization of Latinx populations is not a new phenomenon. Racism has always existed within Latinx communities or countries of origin, but is not typically openly discussed or identified as such. However, decades of research have shown that an individual’s “street race” or “socially-assigned race” has significant impact on health and social outcomes [16–19]. For example, Latinx individuals that self-identify their race as Black or Other have worse health outcomes for a variety of diseases, including HIV [20], end-stage renal disease requiring dialysis [21], and infant mortality [22], compared to self-identified White Latinx individuals. Therefore, existing categorizations of race/ethnicity do not reflect the Latinx community’s understanding of race/ethnicity or experience with structural racism, and do not accurately describe the heterogeneity of Latinx populations. This leads to misrepresentation or undercounting of certain subgroups, masks subgroup differences when aggregated into one general Latino/Hispanic category, and has significant impact on health outcomes [15].

Involving marginalized and minoritized populations in policy agenda-setting and design is an effective way of addressing systemic racism [23]. Community health workers (CHWs) and community-based organizations (CBOs) are instrumental to bridging the gaps between health care systems, the resources they offer, and the language, cultural, and economic challenges, or systemic racism, faced by marginalized and minoritized populations. CHWs can improve population health by providing culturally-appropriate health information, facilitating system navigation, and building trust with individuals and communities, among other roles [24, 25]. Prior research by our team has highlighted many benefits of partnership with CHWs and CBOs during the pandemic, especially to improve access to resources and reduce fear within la comunidad Latina [26, 27].

Despite the local knowledge and expertise of CHWs and CBOs, however, they are often not included in policy development or prioritization processes [28, 29]. A grassroots multisector coalition formed in 2020 to reduce longstanding health disparities magnified by the COVID-19 pandemic, known as LATIN-19, has worked to address such barriers by partnering with, strengthening relationships between, and elevating voices of numerous CBOs and CHWs, which has resulted in increased community-engaged strategies in policy solutions [30]. Community engagement, advocacy, and policy efforts by LATIN-19 helped improve COVID-19 vaccination rates among la comunidad Latina in North Carolina [27, 31].

Although the creation of this multisector coalition has increased private and public sector engagement with la comunidad Latina, it is important for the community to have the most appropriate and current language to increase its ability to advocate for itself and advance health justice. Yet, Latinx individuals often do not label their experiences with discrimination or systemic barriers as racism [32]. Naming racism allows individuals and communities to highlight injustices and their impact to lead to meaningful interventions to improve their health and wellbeing [33]. Language activism in this sense can increase awareness of and resources to address injustices that would otherwise remain invisible to decisionmakers, researchers, and advocates not directly engaged with the community [34].

Theoretical framework

This study utilized focus groups with CHWs and CBO leaders, discussion on the COVID-19 pandemic’s impact on la comunidad Latina, and lessons learned for future public health crises, to examine how racism is experienced and described by members of la comunidad Latina directly. We used the Levels of Racism Framework by Dr. Camara Jones, which describes three levels of systemic racism, including institutionalized or structural racism, personally-mediated or interpersonal racism, and internalized racism, to guide the design of this study [7]. Given the known disparities in access to care and health outcomes during the COVID-19 pandemic and beyond, we hypothesized that 1) qualitative data analysis would demonstrate several explicitly and implicitly discussed examples of different forms of racism experienced by la comunidad Latina and 2) there would be differences between the language used by CHWs and CBO leaders to describe experiences of racism and potential solutions. This analysis was then used to develop community-informed policy recommendations to address systemic racism in Latinx communities.

Methods

We used a qualitative descriptive design [35] with data collected from three focus groups (N = 16) in July 2022 via Zoom to address study aims. Participants were recruited through word-of-mouth among research team members. Specifically, the research team partnered with one of the leaders of LATIN-19, who is well-known and trusted by la comunidad Latina, to recommend CHWs or CBO leaders that participated in outreach to la comunidad Latina during the COVID-19 pandemic. The research team then sent introductory emails in both English and Spanish to these individuals describing the goals of the research project. Individuals who agreed to participate received a consent form via email and expressed their consent verbally at the beginning of each focus group. Eligibility criteria included: being at least 18 years old; self-identify as Latinx; and self-identify as a CHW or CBO leader.

Our sample included seven CBO leaders and nine CHWs, for a total of 16 participants. CBO leaders represented six different CBOs. CHW participants were employed by two CBOs serving la comunidad Latina in North Carolina. Each focus group included four to seven participants and was co-facilitated by bilingual and bicultural researchers. Participants were given the option to participate in focus groups in English or Spanish. All participants preferred to participate in Spanish. We did not collect sociodemographic data from participants and names were not recorded during focus groups to protect participant confidentiality. Participants received $45 after the discussion as compensation for their time.

Focus group discussions were semi-structured and included four open-ended questions based on the results of prior research [27] and community priorities discussed in recent LATIN-19 meetings:

1. What policy changes have improved COVID-19 testing and vaccine distribution? When we say “policy”, we are referring to rules, programs, or partnerships initiated by the state or local government, such as North Carolina Department of Human Health Services (NCDHHS) or the city of Durham.

2. What community interventions have improved COVID-19 testing and vaccine distribution? What are some cases where the community stepped up to meet a need that the state was not addressing?

3. What community interventions still need policy support to sustain community efforts?

4. What are the key lessons learned during the COVID-19 pandemic that can improve the health of our community in the future?

Focus group discussions were audio-recorded, transcribed in Spanish using SonixAI, a professional artificial intelligence transcription and translation software, and analyzed in the original language. Transcriptions were reviewed by bilingual researchers for accuracy and identifying information (such as names or legal status) was redacted. In a prior study, we used inductive thematic analysis, creating codes from constructs that emerged in interviews and applying them to subsequent interviews using a constant comparative approach [36, 37]. This prior study highlighted the misalignment between community and policy interventions during the COVID-19 pandemic, the benefits of several pandemic-era policies that ended with the Public Health Emergency (PHE) Declaration, and the unintended consequences of policies created without community input. More detailed results of the inductive thematic analysis are summarized in another manuscript [26].

For the current study, we conducted a summative analysis [38], including a word frequency analysis of the words racism (racismo), race (raza), discrimination (discriminación), and policy (políticas or políticas publicas) in the original language to assess explicit discussion of racism. We selected the words discrimination and policy because the most common form of racism discussed is personally-mediated racism, specifically discrimination [39, 40], and policy is a significant contributor to institutionalized racism. We then used a directed content analysis approach, applying codes based on the Levels of Racism Framework to analyze implicit examples of racism (see Table 1) [7, 38].

Two independent researchers coded each transcript and resolved discrepancies by consensus to enhance credibility of findings [41]. Dedoose online qualitative data analysis software was used to facilitate team-based coding and data analysis [42]. Codes developed as part of our prior inductive thematic analysis and current directed content analysis were then analyzed by code frequency by position (CHW vs CBO leader) and code frequency by CBO.

Results

Word frequency

We analyzed the frequency of use of the words racism (racismo), race (raza), or discrimination (discriminación) in the focus group transcripts. The words race or racism were not used by any participant (CHW or CBO leader) in any of the 3 focus groups. The word discrimination was used once in the context of discussing that CHWs did not discriminate against non-Latinx community members seeking help or resources at events hosted by LATIN-19 or Latinx CBOs. The word policy (políticas or políticas públicas) occurred 5 times during both of the CHW focus groups and 20 times during the CBO leader focus groups. An additional file provides exemplary quotes in their original language of Spanish and their English translations [see Additional file 1].

“Our first purpose was to serve Latinos and we ended up serving all kinds of people, that is, we served African Americans, White people, all kinds of people. We did not discriminate, we gave the service to whoever asked for it. So, the lack of resources is something that affects us a lot.”

Code Frequency by Position (CHW vs CBO leader)

CBO leaders discussed collaboration and funding and directly discussed policy more frequently than CHWs. Overall, CBO leaders implicitly discussed examples of forms of racism, as coded using the Dr. Camara Jones’ definitions, more frequently than CHWs (56.3% vs 43.7%, respectively). Specifically, examples of institutionalized and internalized racism were discussed more by CBO leaders than CHWs.

CHWs discussed access to resources, benefits of CHWs, education, language barriers, sources of information, positive impacts of policy, problems that still exist, proof of identification, resource availability, resource awareness, transportation, government trust, institutional trust, and vaccine uptake more frequently than CBO leaders. CHWs also discussed policy indirectly more frequently than CBO leaders.

Code Frequency by Organization

CHWs from CBO #1 discussed access issues, information about the virus, misinformation, and resource availability and awareness more frequently than CHWs from CBO #2. In comparison, CHWs from CBO #2 discussed benefits of CHWs, direct connection with the community, COVID vaccination, education, and institutional trust more than CHWs from CBO #1. Overall, CHWs from both CBOs implicitly discussed examples of forms of racism almost equally (48.9% vs 51.1%). Examples of institutionalized and internalized racism were discussed equally by CHWs from both CBOs (50% each). However, CHWs from CBO #1 discussed examples of personally-mediated racism much less than CHWs from CBO #2 (22.2% vs 77.8%, respectively).

Application of the Levels of Racism Framework

Institutionalized racism

Themes that emerged related to institutionalized racism included: 1) differential access to resources due to language barriers; 2) differential access to resources due to uninsured or undocumented status; 3) exclusionary policies that do not account for cultural or socioeconomic differences; 4) lack of action in the face of need; and 5) difficulties obtaining sustainable funding.

1. Differential access to resources due to language barriers –

   “At the beginning, I saw that people were looking for their vaccination and it took a long time to make an appointment … It was a long time to wait or they had to go to places far away. There were people who drove up to an hour. There was also the language barrier that when they had a place nearby, there was no information or people who spoke Spanish at the vaccination site. And that limited the people to go to get vaccinated, because they were already going to get a vaccine that they did not know much about and, when they got there, there was no one to give them a good explanation or to calm down any doubts they had.”

As described above, CHWs and CBO leaders highlighted a prevalent disconnect between resource availability and la comunidad Latina’s access to those resources. For example, initial vaccination sites lacked both Spanish-speakers and informational resources in Spanish, limiting la comunidad Latina’s ability to obtain answers to their questions, accurate information, and reassurance. Although pharmacies intended to increase access to testing and vaccination, few pharmacies had Spanish-speaking providers or interpreter services. At-home rapid tests did not have instructions in Spanish, or even in English sometimes, and instructions for at-home rapid tests varied by manufacturer. As a result, CHWs and CBO leaders reported community concern about whether misinformed use of at-home rapid tests contributed to disproportionate COVID-19 morbidity and mortality among la comunidad Latina due to unclear information about how or when to use them. Participants also described a lack of timely printed information, videos, graphics, and comics to disseminate through Spanish media. When these materials did begin to emerge, they were not verified or reviewed by members of la comunidad Latina, leading to incorrect translations of information. Furthermore, Spanish-language resources did not address the needs of members of la comunidad Latina who speak dialects of Spanish or other native languages.

As the pandemic progressed and CBOs and CHWs created or received access to additional resources, including personal protective equipment (PPE), COVID-19 tests, and vaccinations, they were able to better connect la comunidad Latina with critical supplies and care. CHWs repeatedly cited how community-based COVID-19 testing and vaccination sites with Spanish-speakers led by trusted CBOs were focal points for the community as word spread amongst neighborhoods and care providers about these locations. They additionally discussed the importance of leadership from la comunidad Latina, maintaining community collaborations and coalitions established during the pandemic, and strengthening those connections across the state to improve population health of la comunidad Latina.

• 2.
  Differential access to resources due to uninsured or undocumented status –

  “We have learned that these concepts, they do work. Provide it in the native language, provide it locally for free. Do not require health insurance. And don't let me die because I don't have insurance. And that is what we are doing. We don't let people die because they don't have insurance or can't pay. That is immoral, whether one's religion is this or that. That policy has to change. The policy has to change to reflect that those of us who pay taxes want a healthy community.”

CHWs and CBO leaders described a lack of clarity, particularly early in the pandemic, around what resources were available to uninsured or undocumented individuals in la comunidad Latina. Despite assurance that identification or insurance cards were not required for testing or vaccination appointments, many pharmacies continued to ask for forms of identification to confirm individual appointments. These situations posed a significant barrier to care for undocumented or uninsured individuals and increased fear of seeking care when sick. Initial requirements that testing and vaccination occur through health clinics also decreased access for uninsured and undocumented individuals, many of whom were disconnected from traditional health care systems. Concerns about Public Charge were mentioned repeatedly by CHWs and CBO leaders as a source of fear and a barrier to seeking preventive or acute care for COVID-19, especially for recently immigrated individuals with visas, green cards, or other forms of legal documentation, in addition to individuals in mixed-status households and undocumented individuals. While they endorsed improvements in access to care over the course of the pandemic, participants described several remaining gaps for undocumented individuals. As highlighted above, participants expressed that la comunidad Latina contributes to the American economy in many ways, including taxes, and deserve healthy lives and communities, like everyone else.

• 3.
  Exclusionary policies that do not account for cultural differences – 

  “I think the community at the beginning of the pandemic felt lost and perhaps a bit fearful because if they needed help, they didn't know how to ask for it. But I think the nonprofits are helping the community. We began to work with them [the community], to talk to them, to tell them how the vaccines were going to work, who was going to be vaccinated first, who had the priority, what were the groups. As time went by and we began to interact with the community, they began to learn how it worked and they began to lose their fear of asking for help when they were in bad shape.”

CHWs and CBO leaders discussed that at-home rapid testing kits were distributed per household without recognition that low-income individuals often live in multi-family or multigenerational households. This policy systematically decreased access to rapid testing by income and living situation for many at higher risk of infection because of their employment as essential workers. When this issue was raised, CHWs were told that the tests could be purchased at pharmacies and other locations, but these families often did not have the disposable income to spend approximately $20 for 1–2 tests when other sources were unknown or unobtainable due to language or technology barriers. Furthermore, the initial requirement that individuals use at-home rapid tests to return to work did not account for difficulties faced by those who do not speak English, have low incomes, or live in multi-family households. La comunidad Latina preferred in-person testing and vaccination at community-based events staffed by health professionals to ensure that tests were conducted appropriately, results were accurate, and individuals were able to obtain information in their native language from trusted sources. Requirements that individuals use emails to sign up for testing or vaccination appointments also limited access to appointments and made it difficult for individuals to obtain results if tested.

CBOs and CHWs discussed how community outreach and community-based interventions increased connections to the health care system for many individuals not previously seen within traditional clinical settings. For example, registration with primary care clinics for free COVID-19 testing and vaccination also increased identification and enrollment of those that qualified for other benefits, such as Medicaid, SNAP, and WIC. Many who were seen in the hospital for the first time for COVID-19-related illness were treated for other illnesses not previously identified. CHWs and CBOs reported that working with CHWs helped increase trust and reduce fear, and helped individuals navigate a daunting health care system.

Despite these benefits, many government and private institutions were inexperienced in working with CBOs and CHWs prior to the pandemic. CBO leaders reported some institutions were not respectful or responsive in their engagement with Latinx CBOs. And despite growing institutional requests to partner with CBOs, CBO leaders expressed feeling tokenized because their “seat at the table” was often powerless and partnerships were inauthentic.

• 4.
  Lack of action in the face of need –

  “We could have, as an organization, closed our doors …, but that was not the decision we made as an organization. We made the decision to keep our doors open when others were closing, to move our staff who were possibly working in mentoring or economic development to the phone, answering the calls that were coming in at full throttle, to create broader systems to support the community.

  It was up to us then to report the changes in terms of community support that informed [academic health center]’s work, because [academic health center] didn't have it and it was up to us to do it with them, right? So, I think we also have to take into account that there was a response from the [community-based] organizations and I am including all the organizations that are here. A response that made the county felt supported, right? …. All these organizations created a public health force. Public health force that did not come from the Health Department and the hospital because they were busy, right? But we were like the backup. And I think it's important to recognize that the biggest policy change was the decision of the grassroots organizations to decide to act as a public health force. When we were not asked, we did it and then we required support, which was something else. But I think it's important to recognize that, that the action was not just DHHS or Durham County, … But on behalf of our organization we went in and filled health gaps. Because they could not cope with those gaps.”

CHWs noted inconsistent policy and funding responses to developing needs in la comunidad Latina, particularly early in the COVID-19 pandemic. They expressed frustration with the inaction of policymakers in the face of a disproportionate rise in COVID-19 cases in la comunidad Latina. Often, resources were insufficient, not culturally-appropriate, or delayed. While this may have been a symptom of the general lack of understanding around the transmission of and care for COVID-19 in the early pandemic, CHWs suggested the impact of COVID-19 on la comunidad Latina often took significant effort to highlight to policymakers, even as the pandemic progressed.

CHWs and CBO leaders discussed how the health system did not respond in ways that were helpful to la comunidad Latina until the CBOs and CHWs initiated actions. When the hospital and Department of Health were not providing sufficient culturally-appropriate resources to la comunidad Latina, CBOs came together to share resources and discuss solutions to address those gaps, contributing significantly to the public health workforce and improved community health. Eventually, local health care systems became involved and helped sponsor some of the CBO-led and CHW-staffed community-based events. However, as vaccines became more available and people began to “return to normal”, PCR testing and support for community-based events dwindled, regardless of la comunidad Latina’s preference for these types of events and higher morbidity and mortality related to COVID-19. Overall, CHWs and CBO leaders reported decreased funding and support for la comunidad Latina as the pandemic progressed, despite various ongoing needs, including low vaccination rates for children, low booster uptake for individuals of all ages, and increased socioeconomic and mental health needs as a result of the pandemic. The lack of sustained funding also increased burnout among CHWs and CBO leaders and disillusionment among community members, as much of the progress made began to unravel.

• 5.
  Difficulties obtaining sustainable funding –

  “The reality is this monkeypox virus is beginning to emerge…We are well positioned to respond to this, provided the necessary financial resources are available. Not that the resources come when it is already a major problem that is out of control, but that the response and resources come faster than they did with COVID-19. … Our community health workers, well, they are trained. They are trained, they are already in the field working on a daily basis, and some of them are already unpaid, but they continue to do the work. So, taking advantage of that, what has been proven to work, for general health situations, not just pandemics and viruses, like monkeypox, but also the general health issues that are a reality in our communities.”

CBO leaders and CHWs discussed that early in the pandemic, when funding was more readily available, it was not distributed equitably across CBOs. Therefore, it did not reach the communities that needed resources the most. As the pandemic progressed, less funding was available to CBOs and CHWs to organize community-based events, which decreased availability of testing and vaccination in community-trusted locations with Spanish-speaking providers. CHWs received a wide range of trainings during the pandemic related to COVID-19, mental health, primary care services, health care system navigation, and more. However, due to lack of funding, many CBOs discontinued their CHW programs and CHWs were forced to seek employment in other fields, such as construction or food industry. CBO leaders and CHWs expressed significant frustration because this decreased support occurred at a time when COVID-19 was still prevalent in la comunidad Latina and the incidence of other viruses, such as monkeypox and respiratory syncytial virus (RSV), was rising.

Despite these challenges, la comunidad Latina demonstrated its resilience and capacity to confront major health and social crises during the COVID-19 pandemic. Therefore, CHWs and CBO leaders felt it was important that state and federal agencies, in addition to local private and public institutions, continue supporting CBOs and CHW programs, throughout the “return to normal” and beyond, to maintain and strengthen the formal and informal networks of support for la comunidad Latina established during the pandemic. Participants also reported that CBOs and CHWs representing marginalized and minoritized communities were often asked by the health care system and other private and public institutions during the pandemic to help their communities on a volunteer basis, but infrequently paid for their time. As a result, CBO leaders and CHWs suggested that government and private institutions invest in CBOs on a continual basis to maintain the partnership and trust established during the pandemic and leverage these networks when other health or socioeconomic needs arise.

Personally-mediated racism

Themes that emerged related to personally-mediated racism included: 1) lack of cultural awareness or humility; 2) fear-inciting individuals or ads, including misinformation targeting Latinx populations; and 3) negative interactions with non-Latinx individuals, organizations, or institutions.

1. Lack of cultural awareness or humility –

   “I think something that worked very well was giving people healthy food, because now we are handing out fruits, vegetables, meats, healthy food. Like at the beginning it was just boxes of canned food that Americans are more used to eating, but the Hispanic community is used to eating differently, right? So at the beginning, when the cans were given, many people did not know how to eat that. Now that we have changed a lot the variety of food we are handing out, we have a better contact with people and because of this we have a chance to ask them ‘Are you vaccinated? Not vaccinated? What is the reason, why not?’”

CHWs discussed the importance of medical providers from la comunidad Latina and trusted community leaders to deliver culturally-appropriate information for improved community engagement. Participants discussed that many Latinx communities often prefer natural or home remedies over prescription treatments or vaccinations. Yet, non-Latinx providers often disapprove of the use of natural or home remedies. As a result, many Latinx individuals do not disclose the remedies they are using at home or how changes to their prescription medication use, negatively impacting health outcomes. As described in the quote, participants also discussed the provision of culturally-appropriate foods at community-based events, which increased community engagement and opportunities for accurate information dissemination, while reducing fear and distrust of partnering health care systems and government institutions.

• 2.Fear-inciting Spanish-language media and misinformation –

“I think that something that was very important was also the videos made by LATIN-19 of Dr. [redacted] and Dr. [redacted] and other doctors. They started to give out information about all the bad information on YouTube and social media where they said that they were going to put a microchip, and many other things, that made people afraid to get the vaccine.”

CHWs often discussed the need to help community members differentiate accurate sources of information from those focused on inciting fear or spreading misinformation. During the pandemic, this was particularly difficult because several CHWs received reports from community members about advertisements or announcements on social media designed to seem credible, but were actually spreading misinformation in Spanish-language.

• 3.Negative interactions with non-Latinx individuals, organizations, or institutions –

“I have been here for [what seems like] 100 years. I have much more grey hair than you. And when I arrived, the concept of Latino did not exist. I was Black because I was not White. It was that simple in this state. Either you were White or you were Black. I was not White, so I was Black. And it has taken these 100 years to make them realize that there are people who are not White and who are not Black, which is us.”

CBO leaders discussed how individuals from la comunidad Latina affiliated with North Carolina’s State Department were initially dismissed when they attempted to share the numerous barriers to COVID-19-related resources and increased health and social risks la comunidad Latina was facing early in the pandemic. They reported that state government officials did not begin to address the increasing needs of la comunidad Latina until several CBOs joined together to increase advocacy efforts. There were also several examples of vendors interacting poorly with CBOs representing la comunidad Latina, which can be considered both institutionalized and interpersonal racism based on Dr. Camara Jones’ definitions. Finally, multiple participants discussed the importance of perceived race and how that impacts the visibility and access to resources for la comunidad Latina. However, CHWs and CBOs discussed that coalitions such as LATIN-19 increased collaboration across CBOs and increased visibility and respect for the collective power of la comunidad Latina.

Internalized racism

Themes that emerged related to internalized racism included: 1) fear of seeking information or medical care; 2) resignation or hopelessness; and 3) competition among Latinx CBOs.

1. Fear of seeking information or medical care –

“There are many people who may speak the language but don't know how to navigate in a completely different system. So, sometimes it's embarrassment, sometimes it's this, I don't know, shyness when entering a circle where it's not so comfortable.”

Participants discussed decreased care-seeking behaviors in reaction to prior negative experiences with government or health care institutions. This was described as shame or shyness in uncomfortable settings, such as health care systems. Benefits of CHWs, including their direct connection with community, and engagement with CBOs were discussed as strategies that increased confidence when seeking resources and navigating health care systems.

• 2.Resignation or hopelessness –

“COVID-19 is not gone, but the funds are ending. So, what are we going to do? We are going to continue working and there are already people who are working without pay, without a salary, right? So COVID-19 is not gone and now we are already talking about, well, another virus with monkeypox. Right? Nothing more. With this I want to let you know that COVID-19 is not gone. We have to keep working. People continue to arrive at hospitals to a lesser extent. But it is there.”

CHWs and CBO leaders alike discussed the hardworking nature of la comunidad Latina, including the willingness of many to work despite not receiving pay during particularly difficult times in the pandemic, especially for the benefit of others in la comunidad Latina. Based on Jones’ definition of internalized racism, these examples can be understood as a manifestation of hopelessness or resignation that la comunidad Latina cannot wait for help to come from outside of the community, and therefore must help themselves.

• 3.Competition among Latinx CBOs –

“If we are put in competition against each other, sometimes even fighting for funds, this does not foster the collaboration and mutual support that is needed… to address health challenges such as those faced by the community.”

CHWs discussed their concern that decreased quality of care was being provided by some CBOs from la comunidad Latina to individuals from their own communities. Furthermore, several CHWs and CBO leaders discussed the difficulties of working in siloes, lack of collaboration across CBOs, and competition between CBOs for sources of funding. Ultimately, there was agreement that these issues led to poor public perception of CBOs by members of their own comunidad Latina and delayed progress toward shared goals.

Discussion

Our results demonstrate that, although la comunidad Latina did not name racism as such, CHWs and CBO leaders experienced all levels of racism described by Dr. Camara Jones’ framework during the COVID-19 pandemic [7]. This difference in language may be due to the Black and White nature of race and racism discussions in the U.S., differences in Latinx communities’ understanding of race/ethnicity, language barriers, and/or predominant self-identification of Latinx individuals as “Other”, instead of Black or White.

Our research demonstrates the importance of including a variety of perspectives, given the differences in themes discussed by CBO leaders compared to CHWs. Additionally, differences in themes discussed by CHWs affiliated with one CBO compared to another CBO emphasizes the importance of including CHWs from multiple organizations. Specifically, CHWs associated with one CBO discussed examples of personally-mediated racism more often than CHWs from another CBO. This may be related to differences in country of origin and “street race” of CHWs in each organization. Future studies can evaluate for these differences further by collecting de-identified information about “street race” vs self-identified country of origin or race/ethnicity, similar to Lopez et al. [17], to compare across CBOs and/or positions (CHWs vs CBO staff vs CBO leadership).

Most examples of racism were related to institutionalized racism. This is unsurprising given that focus group questions specifically asked about policy and community interventions. Nevertheless, examples of personally-mediated and internalized racism demonstrated the unique ways in which these forms of racism manifest in la comunidad Latina, including inequitable distribution of COVID-19-related resources during the pandemic and sustainable funding pre/post pandemic, poor treatment by Latinx CBOs of Latinx individuals, and competition between Latinx CBOs.

Notably, our analysis also demonstrated that forms of racism may evolve over time from institutionalized to personally-mediated to internalized racism. For example, a lack of language resources (institutionalized racism) may contribute to poor interactions in clinical settings (personally-mediated racism), which leads to fear of seeking help (internalized racism). Additionally, historical policies against Latinx and immigrant communities such as Public Charge (institutionalized racism) increased negative language about Latinx and immigrant communities in public media (personally-mediated racism), which also increased fear of seeking help despite need during the pandemic (internalized racism). We have not seen discussion of this evolution of racism in the literature. Therefore, this is a novel finding that should be explored further in future research.

Our research also highlighted several anti-racist community-informed policy recommendations that have been demonstrated to be effective in reducing forms of racism in la comunidad Latina. For example, 1) increased funding and support for community-based events in trusted community locations with Spanish-speaking providers and co-led by trusted CBOs is an effective strategy for increasing access to and utilization of public health and primary care services to reduce known inequities in health outcomes for la comunidad Latina. Community outreach and engagement through CHWs decreased fear, increased trust, and improved health care system navigation for individuals not previously engaged with the health care system. Therefore, 2) CHWs may be an effective anti-racist strategy for improving access to and utilization of care for marginalized and minoritized populations not currently receiving routine or regular primary care. Finally, 3) creating sustainable funding mechanisms to support CBOs, CHW programs, and community coalitions can maintain and strengthen established partnerships and networks that can be leveraged for future public health or socioeconomic needs. Each of these recommendations addresses the institutionalized, personally-mediated, and internalized forms of racism discussed in our findings and, therefore, may more meaningfully and sustainably reduce inequities in comparison to other clinical, community, or policy interventions that do not address these upstream factors.

It is important for private and public institutions engaging with marginalized or minoritized communities, especially non-English-speaking communities, to consider different manifestations of racism in the future. There is a need for future studies to directly assess community perspectives of evolving language around equity and racism to specifically determine preferred or better-understood terminology in other cultures and languages. Additionally, our research highlighted the need for CHW and CBO research and policy training to strengthen their ability to directly advocate for their communities [43]. It is unlikely that the root causes of racial inequity can be addressed without first building the capacity of marginalized and minoritized communities to identify and name instances of racism and racial inequity in a way that resonates with decisionmakers. Therefore, this gap in language impacts the ability to plan strategic and sustainable actions to address racial discrimination, perpetuating racism as a public health crisis.

Furthermore, increased alignment in language utilized by health care providers, researchers, and community members can improve health equity data reporting and collection, community engagement with health systems and research, and understanding of genetic and sociocultural factors impacting the health of diverse Latinx communities. Community-informed health equity language can also improve utilization and development of health equity or systemic racism measures for further integration into payment reform. Finally, value-based payment models can create incentives to promote language equity. For example, health systems can increase reimbursement for sites with higher frequency of race-concordant provider interactions, higher number of providers and staff in a clinic or health system that speak multiple languages, scheduling patient visits that require language services with increased time (40 minutes instead of 20 minutes) to improve proper utilization of language services for non-English-speaking patients, not just availability, and higher number of signs or flyers in health systems available in multiple languages.

Our study has several limitations. To address concerns around participant confidentiality, we did not collect sociodemographic data. This limited our ability to understand potential differences in language use by factors such as age, sex, gender orientation, country of origin, recency since immigration, immigration pathway, English language proficiency, native language or language spoken at home, and more. Additionally, few CBOs and CHWs were represented in our sample. All CHW participants in our study were employed by CBOs, which is not always the case. Many CHWs are employed by health care systems, public health departments, and more recently public payors, such as Medicaid [44, 45]. Therefore, our results are not generalizable to all CHWs. Furthermore, we only interviewed CHWs and CBO leaders from organizations serving North Carolina. Due to variations in state demographics and policies, among other factors, our results are also not generalizable to the experiences of racism across and within other states. Finally, the focus group questions were designed to assess existing community and policy interventions and community ideas of needed interventions. As a result, this likely biased our result that most examples of racism discussed by la comunidad Latina were forms of institutionalized racism. This differs from existing literature where forms of personally-mediated racism, such as discrimination or prejudice, are the more commonly discussed and studied forms of racism [46].

Conclusions

Gaps in language impact the ability of marginalized and minoritized individuals, especially community advocates such as CHWs and CBOs, to highlight injustices and their consequences and advocate for community needs. Public and private policymakers, researchers, and health systems should consider these language gaps when engaging with community members in the future. Additional research is needed to further explore the concept of the evolution of racism and identify community-informed health equity language that English and Spanish-speaking community members prefer and understand. Language impacts self-perceptions and the perception of others which, in turn, impacts racialization and health outcomes. Therefore, institutions should also consider use of more nuanced race and ethnicity measures, such as self-identified country of origin, and invest in continuous integration and collaboration with CHWs and CBOs. Finally, research and policy training for CHWs and CBOs can bridge language gaps, increase community engagement in research and policy, and advance design and implementation of community-informed anti-racist policies to more authentically and sustainably address racism as a public health crisis.

Authors’ contributions

Gabriela Plasencia: Conceptualization, methodology, software, formal analysis, investigation, data curation, writing-original draft, writing-review & editing, project administration. Rohan Gupta: Conceptualization, software, validation, formal analysis, data curation, writing-original draft, & writing-review & editing. Kamaria Kaalund: Conceptualization, validation, formal analysis, writing-original draft, writing-review & editing, visualization. Viviana Martinez-Bianchi: Conceptualization, validation, resources, writing-review & editing, supervision. Rosa Gonzalez-Guarda: Methodology, validation, writing-review & editing, supervision. Jessica Sperling: Methodology, validation, writing-review & editing, supervision. Andrea Thoumi: Conceptualization, software, validation, formal analysis, investigation, data curation, writing-review & editing, supervision.

Funding

The manuscript was supported by Bass Connections at Duke University and Duke-Margolis Institute for Health Policy. Dr. Plasencia was supported by the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant Award Number TL1 TR002555. Dr. Gonzalez-Guarda was supported by the National Institute on Minority Health and Health Disparities of the National Institutes of Health under Award Number R01MD012249. Drs. Gonzalez-Guarda and Jessica Sperling were supported by the Duke Clinical Translational Science Institute and the National Center for Advancing Translational Science under Award Number 1UL1TR002553. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Availability of data and materials

The datasets generated and/or analyzed during the current study are not publicly available due to the sensitive nature of discussions during our focus groups, but are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

IRB approval for this study was obtained from Duke University Campus IRB under protocol number 2022–0294. All participants received informed consent forms via email and were given the opportunity to ask questions prior to providing verbal consent at the start of the virtual focus groups.

Consent for publication

Not applicable.

Competing interests

Several individuals listed as authors (G.P., A.T., V.M.B., and R.G.G.) are or were Executive Board Members of the Latinx Advocacy Teamwork and Interdisciplinary Network for COVID-19 (LATIN-19) at the time of this study. Executive Board Members do not receive any direct financial remuneration for their involvement in LATIN-19. Other individuals listed as authors on this manuscript certify that they have NO affiliations with or involvement in any organization or entity with any financial interest (such as honoraria; educational grants; participation in speakers’ bureaus; membership, employment, consultancies, stock ownership, or other equity interest; and expert testimony or patent-licensing arrangements), or non-financial interest (such as personal or professional relationships, affiliations, knowledge or beliefs) in the subject matter or materials discussed in this manuscript.