Friday, July 16, 2021


Key Points

Question  What are the experiences of Black and Latinx communities during the COVID-19 pandemic, and how are these experiences associated with their perspectives on COVID-19 mitigation behaviors, testing, and vaccines?

Findings  This community-engaged qualitative study found that fear, illness, and loss experienced during the pandemic motivated information seeking and mitigation behaviors; vaccine skepticism was high, as was demand for clearer information. Among Black participants, racism and medical experimentation were associated with distrust.

Meaning  These findings suggest that perspectives on COVID-19 mitigation behaviors, testing, and vaccines among Black and Latinx communities are informed by devastating experiences, and transparent information from public officials is needed to eliminate vaccine skepticism.

Abstract

Importance  Black and Latinx communities have been disproportionately affected by the COVID-19 pandemic, yet little work has sought to understand their perspectives.

Objective  To explore the experiences of Black and Latinx communities during the pandemic to better understand their perspectives on COVID-19 mitigation behaviors (eg, mask wearing), testing, and vaccines.

Design, Setting, and Participants  In this community-engaged qualitative study conducted with 18 community-based organizations and 4 health care organizations between November 19, 2020, and February 5, 2021, in New Jersey counties severely affected by the pandemic, group and individual interviews were used to purposively sample 111 Black and Latinx individuals. A total of 13 group interviews were organized by race/ethnicity and language: 4 English-speaking groups with Black participants (n = 34), 3 Spanish-speaking groups with Latinx participants (n = 24), and 4 English-speaking groups with Black and Latinx participants (n = 36). To understand the views of health care workers from these communities, 2 additional groups (n = 9) were convened and supplemented with individual interviews.

Main Outcomes and Measures  Description of Black and Latinx participants’ experiences during the COVID-19 pandemic and their perspectives on mitigation behaviors, testing, and vaccines.

Results  The study included 111 participants (87 women [78.4%]; median age, 43 years [range, 18-93 years]). Participants described the devastating effects of the pandemic on themselves, loved ones, and their community. Their experiences were marked by fear, illness, loss, and separation. These experiences motivated intense information seeking, mitigation behaviors, and testing. Nevertheless, vaccine skepticism was high across all groups. Participants did not trust the vaccine development process and wanted clearer information. Black participants expressed that they did not want to be subjects of experiments.

Conclusions and Relevance  The remaining unknowns about new vaccines need to be acknowledged and described for Black and Latinx communities to make informed decisions. Ultimately, scientists and public officials need to work transparently to address unanswered questions and work collaboratively with trusted community leaders and health professionals to foster partnered approaches, rather than focusing on marketing campaigns, to eliminate vaccine skepticism.

Introduction

As of May 2021, the US has the highest number of cases and deaths in the world. Within the US, the pandemic is disproportionately affecting Black and Latinx groups.1,2 For example, age-adjusted mortality rates for Black and Latinx Americans far exceed those for White Americans.3 Multiple factors are associated with this inequality, including comorbid conditions that increase susceptibility and disease severity.4,5 Disparities in COVID-19 outcomes are also a function of structural and institutional racism.6 Factors such as residential segregation, wealth inequality, and mass incarceration impact the ability of members from different racial/ethnic and socioeconomic groups to avoid infection and seek care.7-11 These factors are the legacy of slavery, Jim Crow laws (state and local laws enacted in the late 19th and early 20th centuries that enforced racial segregation in the southern United States), and discriminatory public health interventions that together are associated with a pervasive sense of distrust of public health authorities.12,13

Black and Latinx groups have been the target of multiple discriminatory health interventions.14 Experiences including experimentation during slavery, the Tuskegee Syphilis Study, and the contraception trials in Puerto Rican women, predispose Black and Latinx communities to skepticism about public health interventions.12,15 Today, this history provides critical context for the strategies needed to fight the COVID-19 pandemic, including Centers for Disease Control and Prevention–recommended mitigation behaviors (eg, mask wearing, handwashing, and physical distancing), testing, and vaccines.16 In recent surveys, Black, Latinx, and low-income respondents were much less likely to report trust in public health officials in association with COVID-19, compared with White respondents.17 Black and Latinx adults are also more likely to “wait and see” before receiving the COVID-19 vaccination.18

Surveys, news reports, and anecdotes have brought attention to the inequities experienced by Black and Latinx communities during the COVID-19 pandemic.17,19 To date, little work has delved deeply into the experiences of these communities to better understand their perspectives on COVID-19 mitigation behaviors, testing, and vaccines. Such information is critical to develop appropriate public health messages and strategies. Therefore, this study explores the experiences of Black and Latinx adults during the pandemic to understand how these experiences are associated with their perspectives on COVID-19 public health strategies.

Methods

We conducted online group and individual interviews as part of NJ HEROES TOO (New Jersey Healthcare Essential Worker Outreach and Education Study–Testing Overlooked Occupations),20,21 funded by the National Institutes of Health Rapid Acceleration of Diagnostics–Underserved Populations (RADx-UP) Initiative.22 The RADx-UP Initiative seeks to better understand disparities among underserved populations, including access to testing. We purposively sampled Black and Latinx individuals from New Jersey counties (ie, Essex, Middlesex, Passaic, and Union) with high rates of COVID-19 infections and deaths during the initial surge in 2020, high levels of poverty, and large concentrations of Black and Latinx populations. Adults older than 18 years of age who identified as Black or Latinx with English or Spanish as their primary language were eligible. We partnered with 18 community-based organizations and 4 health care organizations in these counties. Through biweekly online meetings, representatives helped with development of the research protocol, recruitment, and debriefing sessions to help interpret findings.23 This study was approved by the Rutgers Biomedical Health Sciences institutional review board and follows the Standards for Reporting Qualitative Research (SRQR) reporting guideline.24 All participants provided verbal consent prior to participation.

Data Collection

We organized 13 group interviews and 8 individual interviews between November 19, 2020, and February 5, 2021, using a secure Zoom platform. Group interviews had a primary and secondary facilitator (M.E.J., D.H., D.L., and/or S.V.H.) with 2 study team members (Z.R.-N., M.B.P., M.M., and/or E.M.A.) for notetaking and technical assistance. Facilitators followed the interview guide, which we developed through literature review, the team’s experience, and partner feedback (eMethods in the Supplement). We adapted and added questions to explore emerging themes. Group interviews were organized by race/ethnicity and language: 4 English-speaking groups with Black participants, 3 Spanish-speaking groups with Latinx participants, and 4 English-speaking groups that included Black and Latinx participants (Figure). We also conducted 2 group interviews with Black and Latinx participants who worked in health care settings as ancillary or support staff, given their unique perspective as health care workers and community members. We supplemented health care worker group interviews with 8 individual interviews to accommodate their schedules. Group interviews lasted approximately 90 minutes, and individual interviews lasted 20 to 30 minutes. All interviews were recorded and transcribed. We used ATLAS.ti 8 software (ATLAS.ti) to facilitate data management.

Data Analysis

We used an “editing” approach to analyze the data.25 Transcripts were first read openly to gain an initial sense of the group conversation. On a second reading, meaningful segments of text were highlighted, then cut, pasted, and rearranged to create 4- to 5-page summaries organized around emerging themes. We then analyzed the summaries together of groups with only Black participants to identify themes that were common to those groups; subsequently, we identified themes in summaries of groups with only Latinx participants in the same manner. Looking across both sets, we then identified the themes common to both groups. At that point, we analyzed the groups with Black and Latinx participants to confirm or disconfirm the existing findings and found that we had achieved data saturation—no new themes emerged from this analysis. Finally, we analyzed health care worker data, using the same process, which yielded similar findings; therefore, we include health care worker perspectives under our key themes.

Results

We recruited 200 individuals, 64 of whom were not eligible and 25 did not attend, for a final sample of 111 individuals (87 women [78.4%]; 68 Black participants [61.3%] and 43 Latinx participants [38.7%]; median age, 43 years [range, 18-93 years]). The Table summarizes sample demographic characteristics, and the eTable in the Supplement summarizes demographic characteristics by group. We identified 2 key themes from the data: (1) the devastating effects of the pandemic motivated intense information seeking and mitigation behaviors and testing and (2) even within that context, vaccine skepticism was high (Box).

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Black and Latinx Community Perspectives on COVID-19 Mitigation Behaviors, Testing, and Vaccines | Vaccination | JAMA Network Open | JAMA Network

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