Integrated Methods for Applying Critical Race Theory to Qualitative COVID-19 Equity Research

Abstract

Background

Racism persists, underscoring the need to rapidly document the perspectives and experiences of Black, Indigenous and People of Color (BIPOC) groups as well as marginalized populations (eg, formerly incarcerated people) during pandemics.

Objective

This methods paper offers a model for using Public Health Critical Race Praxis (PHCRP) and related critical methodologies (ie, feminist and decolonizing methods) to inform the conceptualization, methods, and dissemination of qualitative research undertaken in response to the evolving COVID-19 pandemic.

Sample

Using purposive snowball sampling, we identified organizations involved with health equity and social justice advocacy among BIPOC and socially marginalized populations. Focus group participants (N=63) included community members, organizers, activists, and health workers.

Design

We conducted topic-specific (eg, reproductive justice) and population-specific (eg, Asian and Pacific Islander) focus groups (N=16 focus groups) in rapid succession using Zoom software.

Methods

A self-reflexive, iterative praxis guided theorization, data collection and analysis. We obtained community input on study design, the semi-structured discussion guide, ethical considerations and dissemination. Applying PHCRP, we assessed our assumptions iteratively. We transcribed each interview verbatim, de-identified the data, then used two distinct qualitative techniques to code and analyze them: thematic analysis to identify unifying concepts that recur across focus groups and narrative analysis to keep each participant’s story intact.

Results

The praxis facilitated relationship-building with partners and supported the iterative assessment of assumptions. Logistical constraints included difficulty ensuring the confidentiality of virtual discussions.

Conclusions

These novel approaches provide an effective model for community-engaged qualitative research during a pandemic.

Introduction

Racialized communities are disproportionately impacted by disasters and public health efforts to respond to them. In the first year of the COVID-19 pandemic, the life expectancies of Black and Latinx populations decreased 3 to 4 times the life expectancies of Whites,1,2 echoing early predictions that cases, deaths, hospitalizations, and other outcomes would be highest in the communities and populations most impacted by historical and contemporary forms of structural racism. Racism has been defined in many ways. Gilmore’s definition of it, which is widely used in Critical Race Theory, emphasizes its structural nature: racism is the “state-sanctioned and/or extralegal production and exploitation of group-differentiated vulnerability to premature death.”3

Structural racism is a complex assemblage of mutually reinforcing and interlocking ideas and practices through which systems and institutions create and maintain racial injustice.4–7 It both increases risk (eg, by mandating essential work in high COVID prevalence settings) and limits access to solutions (eg, equitable access to COVID testing) among communities of color.8–10 Racism selectively renders some solutions (eg, access to testing) socially and politically possible, while creating the impression that others (eg, closing incarcerated settings) are unimaginable.11 Understanding the effects of racism is important for addressing the implications of the current public health disaster and future ones. It is also extremely relevant in preparing for emergent high levels of death, disability, financial hardships, and grief associated with it and its implications for generations to come.

In March 2020, the Center for the Study of Racism, Social Justice & Health responded to the pandemic by forming the UCLA/Charles R. Drew University COVID-19 Task Force on Racism and Equity (“the Task Force”), which immediately launched the “COVID Storytelling Project (ie, Project).” The Project, an ongoing, two-pronged research study, has been documenting the perspectives and experiences of diverse racialized and marginalized populations and communities (eg, immigrants, people experiencing incarceration, unhoused people, and racial justice protestors) over the course of the pandemic.

The goals of the study are to understand how social injustices, in particular structural racism, have affected the health of racialized and marginalized populations and communities during the COVID-19 pandemic by prioritizing the voices of communities that are missing from or misunderstood within dominant public health discourse.12 The existence of structural and other forms of racism is well-documented in the health equity evidence base and in other literatures (eg, sociology, law, economics).13–17 The critical methodologies, specifically, Public Health Critical Race Praxis (PHCRP), on which the study is based, frame racism as impacting all aspects of how society is organized; they recognize that the oppressive, exploitative systems of White supremacy, capitalism, and patriarchy intersect and mutually reinforce one another.4,18–21

Working from the understanding that structural racism exists, PHCRP-based projects pursue answers to one overarching question: How is racism operating here?22–24

In this Project, we specifically sought to clarify three points: How does racism:

1) exacerbate the risk of acquiring COVID-19 or dying from it?

2) affect efforts to mitigate and contain the spread of COVID-19?

3) exacerbate hardships among the communities already experiencing racial, economic, and gendered inequities?

In this article, we describe the framework and approaches used in the Project’s qualitative arm through which we conducted virtual focus groups in rapid succession among community organizers and frontline professionals. We also discuss lessons learned to date about integrating Critical Race Theory and empirical methods for qualitative COVID equity research.

Framework: Race Conscious Integration of Theory, Research Methods and Community Engagement

To characterize structural racism occurring during the pandemic and identify ways it contributes to COVID inequities for Black, Indigenous, and People of Color (BIPOC) populations, we use the PHCRP and related critical methodologies (ie, feminist, anti-colonial methodologies). As with other critical approaches, PHCRP requires researchers to explicate how their philosophical and theoretical orientations shape their methods and practice. It is very difficult to stand in our commitments to justice and equity within the reality of our institutions, which reflect how neoliberal academia and the Research Industrial Complex (RIC) operate.25–27 To this end, we developed the framework (ie, a disaster praxis) discussed in more detail below. It draws on applications of Critical Race Theory to public health. This framework informs the Project’s conceptual models, research methods, translation of findings, and community engagement activities. (Figure 1)

Figure 1. Qualitative storytelling framework: rapid assessment of COVID-19-related experiences, perceptions, barriers and recommendations among racially and socially oppressed populations.

This frame is a sociogenic analysis. We examine the larger society within which pandemic inequities are occurring and focus on societal, as opposed to individual-level, determinants of COVID-19 inequities. In particular, we examine historical (eg, indigenous genocide, enslavement of Africans) and contemporary state-sanctioned activities (eg, the global mass displacement of communities by White supremacy). PHCRP’s theory, method and action are built on the social justice-oriented epistemologies described herein, which examine the ill societal body.24,28 To adhere to PHCRP tenets, our approach foregrounds the primacy of racism and articulates assumptions embedded within the research methods and process.

Theory

Social, political, and health systems may undermine the capacity of community-based workers to caretake, organize for justice, and demand dignity for oppressed populations.29 These community workers operate as networked systems. They help to build resilient social environments30 that serve as safety nets and reduce disparities.31–34 Community workers who pursue justice and build power for (and within) their communities have been recognized as essential yet they are under-resourced, overburdened, and under-utilized.35,36 Based on the prior evidence,33,34,37 we conceptualize the COVID-19 pandemic as exacerbating the precariousness of these networks through losses of life, connection, wellness, and resources. Literature on the impact of the COVID-19 pandemic on community-based workers supports this theory.33,34,37

Integrated Methods

The praxis we developed for this project uses community-engaged research practices that encourage communities and professional researchers to partner as equals to conduct research.38,39 As with decolonizing and Black feminist epistemologies, the praxis also critiques conventional modes of knowledge production, which presume the inherent objectivity of science. To support transformative change, we use an iterative, reflexive process that links theory, methods and action at each stage of the research process.18,40,41

Our praxis also learns from the indigenous practice of storytelling. Within this practice, the information gained from participants cannot be reduced to mere narrative data and/or qualitative methods. We position the storyteller both as master of their lived experience and as teacher of their stories; those stories explain power dynamics in the world around them.42 The person receiving the story is the (lifelong) learner (ie, researcher). The decision to root the project in this way was based on our desire to re-relate to research with intentionality.41,43 We re-relate to research during the pandemic by addressing power differentials between the investigators, the communities we engage and the purpose of the research, which is to bolster social transformation.41,43

The stories participants tell about the contemporary and historical conditions of their communities constitute expert knowledge. The participants are the experts sharing how injustices shape the contexts, struggles, reactions, emotions, solutions, and underlying patterns of inequity, which become the processes and pathways through which COVID-19 disproportionately impacts BIPOC communities. The integration of these approaches for knowledge production is appropriate and necessary to study communities’ experiences with structural racism from their perspective.

Centering participants and their stories in these ways helps us to: 1) reconceptualize how we understand reality (ie, epistemology); 2) remain intentional about which worlds or life experiences to prioritize; and 3) stand in solidarity with the oppressed by conscientiously avoiding research approaches that may inadvertently reproduce colonial heteropatriarchal research enterprises.44,45 We dive deeper to explore how multiple axes of oppression impact people on the margins of the pandemic response from within a socio-ecological framework that contextualizes how injustices are interconnected and embodied. 14,46–49

Action

The praxis prioritizes the dissemination of evidence that can support communities’ ongoing movements for racial, reproductive, environmental, and economic justice. We solicit written and oral research and narratives from community-based workers across diverse settings. We use this information to educate ourselves about their work and we disseminate it to others.

An important part of action is to disseminate the findings to the most impacted communities. In addition to the traditional methods of dissemination that include publishing peer-reviewed articles and presenting at scientific conferences, we also share key findings via social media (eg, Twitter, Instagram, and Medium), websites, newsletters, and events (ie, panels). We present the findings directly to community organizations, health and health care institutions, and policymakers. We leverage our platform to amplify the voice of these communities, we invite partner organizations to discuss any topics of interest to them in brief video interviews called “Task Force Talks.” Figure 2 lists topics organizations have discussed to date. The lessons learned from the study results and the feedback from community inform the Task Force’s priorities for future community engagement.

Figure 2. Sample focus group and Task Force Talk questions on COVID-19-related experiences, perceptions, barriers and recommendations among racial/ethnic minority and vulnerable populations.

The framework outlined in Figure 1 is our model for integrating social justice-based methods for the qualitative application of Critical Race Theory, and PHCRP more specifically, to COVID-19 equity research. As described in the next section, the protocols used to conduct the research integrate standard qualitative methods and our critical, reflexive approaches.

Qualitative Methodology

The Project, which is ongoing, began in July 2020 as a series of recurring focus groups conducted in rapid succession among advocates for and members of marginalized populations. The overarching aim of the Project is to hear directly from those who have been working across diverse settings on the frontline and essential issues during the COVID-19 pandemic. Applying principles of community-engagement, we began incorporating community input on study design, dissemination, potential barriers, and ethical considerations. (Figure 3) Prior to initiating the study, the Task Force held community sessions to solicit input on the proposed research. Due to the pandemic and COVID-19 stay-at-home mandates, all recruitment, consenting, and data collection were necessarily conducted virtually (eg, using Zoom meeting software) with participants permitted to join either by internet or telephone. The UCLA Institutional Review Board approved all study procedures and materials.

Figure 3. Qualitative storytelling methods for data collection rapid assessment of COVID-19-related experiences, perceptions, barriers and recommendations among racially and socially oppressed populations.

Data Collection

In collaboration with the community partners, the Task Force developed discussion guides to lead semi-structured focus groups. The guide covered multiple domains including barriers and concerns regarding community testing, COVID-19 mitigation strategies, dominant social and economic inequities and challenges pre-COVID-19, COVID-19 information, and health status and access to health care during the COVID-19 pandemic. Facilitators used the guide to ask 10-15 questions in each focus group. Figure 2 lists sample questions and corresponding probes from the semi-structured interview guides. The items are intended to reveal tensions between ideas of individualism, property and ownership with those of mutual aid, communalism, collaboration and cooperation in response to structural racism. After each focus group, all participants received a thank you note via email and a separate email containing compensation of $75 in the form of an Amazon gift card.

Process

Recruitment

We used a purposive snowball sampling strategy focusing on health equity and social justice advocates to identify organizations from which to recruit participants. We also received recommendations from Task Force members with extensive regional or national social justice involvement and individuals referred by others involved in social justice networks. Community partners who work on a wide range of health equity and social justice concerns such as prison abolition, birthing justice, immigrant rights, LGBTQ+ human rights, and international health were eligible to participate. To accommodate busy schedules, participants are provided a choice of dates and times to participate.

Pre-focus Group Meetings

Administrative matters such as securing informed consent and explaining how to use the technology to participate in the meeting, are handled in pre-focus group meetings. Each recruit attends one 15-minute pre-focus group session, during which they meet the moderator, assistant moderator and dedicated technology assistant who will be facilitating their focus group. The moderators answer questions recruits may have, obtain informed consent, discuss Zoom logistics, and review the community norms for participating in the group discussion respectfully.

The six community norms, informed by feedback from our community partners, are that all participants agree to: 1) allow one person to speak at a time; 2) use the name and gender pronouns each participant provides on their Zoom meeting screens; 3) turn-off cell phones (or take calls off-screen); 4) adjust audio settings to be mindful of background noise while acknowledging that interruptions may happen; 5) engage in respectful discourse regardless of any difference of opinions; and 6) keep confidential the information shared during the sessions. Participants were encouraged to keep their cameras on during each 1-1.5-hour session. Zoom windows include a text box with an individual’s name in it. All participants were permitted to use a pseudonym (if they preferred) rather than their actual name, and asked to add their gender pronouns to the text box.

Focus Groups

All focus groups are conducted using Zoom meeting software, including its video and audio recording functions. The dedicated technology assistant stores all recordings in an encrypted cloud-based application that is compliant with IRB protocols requiring blinded for review. Each focus group has between three and six participants; therefore all participants are more likely to be visible to one another at the same time on a single screen. At the beginning of each focus group, the moderator briefly reviews the community norms with the full group of participants and starts the recording.

Populations of Interest

The Project purposively recruited from racially (eg, BIPOC people), and socially marginalized (eg, people who were formerly incarcerated) populations. Focus group participants include advocates for marginalized populations such as organizers, activists, and health workers, who are members of these populations or work closely with them. Thus far, their work has focused on environmental justice, LGBTQ+ human rights, immigrant rights, undocumented youth, people who use drugs, people experiencing homelessness, anti-gentrification, housing rights, labor rights, anti-racist action groups, reproductive health, mental health, international health, community health workers, youth within the jail system or family members of incarcerated or formerly incarcerated individuals, or people impacted by policing or criminalization. We collected demographic information about participants, the organizations they represent, and the people they serve through a survey.

From July 2020 to March 2021, we conducted focus groups (N=16) with 63 diverse participants. The focus groups were stratified by population (ie, Asian American and Pacific Islanders, LGBTQ+ persons, community health workers) or topic (ie, incarceration and criminalization, immigration and detention, reproductive justice).

Data Analysis

Each interview was transcribed verbatim and two research team members reviewed the transcript for accuracy then de-identified the data so that individual participants cannot be identified from the data. After reviewing and revising each transcript, they uploaded it into Dedoose software for the analyses.50 Subsets of focus groups, organized by topic/focus (eg, incarceration/detention, reproductive justice), were analyzed using two distinct qualitative analytical techniques, thematic and narrative analyses. Thematic analysis allows for the identification of recurrent, unifying concepts. The themes draw connections between issues of equity (such as racism and social justice), health and health care (such as testing and access to a provider), and the social determinants of health (such as housing and employment insecurity and loss) that endure across groups. By contrast, narrative analysis keeps the participants’ stories intact. It views the participants as expert storytellers recounting the conditions of those for whom they care and with whom they work. Participants’ insights about inequities, community health and the pandemic, as well as the stories they share about theirs and others’ struggles, values, and identities doing the work help illuminate how structural racism operates in their communities. Thus, treating the data as stories woven together by participants, provides another tool we can use to examine existing community health networks and the ways larger systems operate. Evaluated in tandem, the thematic and narrative analyses allow the concepts to be unpacked within the participants’ own lived experiences.

Thematic Analysis

Coding for the thematic analyses are completed through an iterative process.51–53 First, two to three members of the study team review all transcripts corresponding to each set of focus groups to generate a preliminary codebook. This development process was guided by the project’s theoretical frameworks and Task Force members’ prior knowledge of the subject matter allowing for both deductive and inductive code development. The deductive strategy allows the conceptual framework to be applied across all sets of focus groups; the inductive approach allows for the development of unique codes specific to each set of focus group topics. After using a consensus approach to establish the coding scheme, the team members independently code the remaining transcripts for that set of focus groups. Analytical memos are also generated through the coding process to mark identified substantive patterns or conceptual clustering that has been instrumental in thematic development. Dedoose data exports enumerate the frequency with which each code is used and situate them into tables. Tables aid in the reducing and organizing of data across codes; the analysts review them for frequency and depth.

Narrative Analysis

A team member creates the narratives for each participant by reviewing each transcript and compiling each individual participant’s contributions. Two study team members then review each narrative to identify how the participants, as both community-based workers and people directly impacted by social injustice, have made meaning of inequity, community-needs, and the pandemic response and experience what they have observed and are living through. Special emphasis is placed on identifying narrative connections between the current moment and longer historical trajectories. After reviewing the narratives individually, the study team discusses these preliminary findings with one another and comes to consensus on similarities and differences, before confirming the final results.

Continuous Reflection

The aforementioned self-reflective critical praxis requires the naming and ongoing review of assumptions throughout the research process to enhance trustworthiness.54–56 Trustworthiness in the validity of study findings is established throughout the research process, and in the analysis phase, we confirm the congruence between our findings and the research aims using the following techniques.56 Prior to data collection, team members completed a questionnaire. Study team members then met on their own to review. Throughout the analysis phase, weekly meetings continue to provide the opportunity for this self-reflection through dialogue on multiple viewpoints and the sharing of salient content specific and methodological literature. Given the diverse expertise comprising the research team, multiple perspectives are represented and inform these discussions. Once the data have undergone a preliminary analysis, preliminary themes are reviewed with representatives from the communities sampled and academic partners in forums and meetings. Finally, to solicit confirmation and confirm the accuracy of complex ideas and quotes, study team members reach out to select participants for clarification and confirmation.

Discussion

Thus far, we have described the integrated, CRT-informed praxis that guides all aspects of the project, disclosed assumptions embedded within it, and described the research methods. Below, we outline lessons learned from our broader theoretical approach as well as logistical and ethical lessons related to the project methodology.

During moments of acute crisis in the pandemic (eg surges in hospitalizations), there is a pressing need to generate actionable evidence and share it with impacted communities quickly. Therefore, we have sometimes opted to share any relevant findings with community immediately even if doing so makes it difficult to subsequently publish the findings in traditional “academic” venues (ie, scientific journals). Our team, which comprises researchers, students, and faculty of color, is subject to many of the same social injustices and health inequities that are of interest to this research. As a result, many members of the research team have had to contend with challenges within and across both professional and personal realms. For us, the project is a “labor of love”; therefore, we continue conducting the work while contending with these challenges and we prioritize giving (back to) the BIPOC and other marginalized communities from which we come.

Decolonized storytelling operates outside of conventional academic public health research40–42,45 in ways that are often oppositional to it. Our methods strive to practice decolonizing methods, being useful to the broader community while responding to the dictates of academia).45 These tensions often leave us dissatisfied and feeling we are not doing either well.57,58 Tuck and Yang cautioned against this when describing the disconnect between work that claims to be decolonizing but that is not in service of actual decolonization.59

While Task Force members are involved with providing mutual aid and building grassroots community power, the formal work of storytelling is limited in how far it can extend and break from existing institutional norms. For example, the copyright standards of many academic journals are unwilling to publish work that has been published previously in reports or op-eds, blogs or other venues that the general public can readily access. This limits the ability to disseminate findings to the public and the scientific community simultaneously. To generate empirical evidence is often labor intensive and, therefore, access to the evidence is biased toward those with more resources, including time. In short, while we seek a progressive challenge to existing systems of inequity, we have found that institutional and structural pressures often confine the work to reformist paradigms.

Below we outline lessons learned related to project design that consider both logistical and ethical considerations.

Recruitment

One central challenge the project has faced has been recruiting, scheduling, and holding focus groups exclusively online. Invitations may be rerouted to junk/spam folders or quarantined by email servers and thus ignored or found after the recruitment period. Strategies such as marking emails as important and copying the person who recommended the potential participant have been useful. Limited availability due to a multitude of reasons (ie, child/elder care), many related to the ways COVID-19 has impacted lives, have also been a barrier. Additionally, documenting perspectives and experiences on local, national and international levels has been challenging because of scheduling across time-zones. Finally, many of those invited to participate declined because of lack of capacity. The work in their communities is of primary concern and does not allow them to participate, even in the online groups.

Remuneration

Institutional restrictions limited the types of remuneration that could be provided to focus group participants to Amazon e-gift cards; however, spending money with this corporation contradicted the social justice principles of many participants. Several of the community-based organizations working with immigrant and detained communities expressed disappointment about the choice of using Amazon considering the company’s ties to immigration and border surveillance enforcement efforts.60,61 Representatives of an organization focused on detention refused to participate due to the amount of the incentive and expressed that their participation would lead to re-traumatization. Thus, they asked for at least double the amount of incentive and required that the study provide self-care (eg, acupuncture) after their participation. We were unable to accommodate the request; therefore, they declined participation. Practically, Amazon gift cards purchased in the United States could only be used within the United States and Canada, making it difficult to recruit international participants. Furthermore, and likely largely due to the pandemic, the study experienced significant delays in delivering incentives.

An additional challenge was the difficulty remunerating partners, many of whom are from under-resourced organizations, for their involvement in the work. Historically, NIH and other funders have provided less support for racially conscious, community-engaged work than for more traditional academic research (eg, clinical or pharmaceutical research). This model makes it difficult to compensate individuals and community-based organizations fairly for their contributions to the work.

Zoom Technology

Though the availability of Zoom technology allowed us to enroll participants who might otherwise be difficult to recruit in person due to, for instance, distance to the study site, the reliance on Zoom technology for all stages of the project (recruitment, consent and data collection) also presents several challenges. First, computer literacy among our participants varied widely. To address this, it was important to provide technical support and instructions in one-on-one or small group meetings scheduled with participants who requested it before the formal focus group and dedicated technical support for the duration of each focus group. Technical glitches related to internet access/connection occurred throughout data collection for both participants and moderators. Participants who used Zoom’s phone-based platform also had difficulty maintaining a reliable connection using their cell phone service providers at times.

Anonymity/Confidentiality

Even though participants were offered an opportunity to use a pseudonym to preserve their anonymity, many participants worked in similar fields (social work, community outreach, etc.), knew each other, and preferred that their contributions to the discussion be associated with (vs disassociated from) their identities. We also had concerns with our inability to know or control for who else might be in a participant’s physical space and the implications of that both for that participant’s comfort and in terms of other study-related considerations (eg, other participants’ confidentiality). This was a challenge that we addressed by continuously underscoring the importance of participants protecting each participant’s confidentiality.

Conducting Community-Engaged, Qualitative Research During the Pandemic

The distinct realities of conducting community-engaged research that emphasized storytelling as the primary methodology are noteworthy. The infeasibility of face-to face interactions during the pandemic—especially the initial months—was not ideal for conducting focus groups. Comfort with technology and unfamiliarity with the Zoom platform posed challenges. 62,63 There were differing levels of familiarity with the technology and access to devices to support that technology. It was necessary for a dedicated co-moderator to provide technical support, assist with name changes, and manage the waiting room.62 Lastly, Lobe et al emphasizes a quiet space with limited interruptions as a requirement for successful online gatherings. In this project, we found that this was not feasible for all participants.63 Given the realities of caretaking for elders, children, and/or sharing living space with others, we included the expectation of interruptions in our community norms.

Considering the aforementioned challenges, doing this type of research during the pandemic did create opportunities. For example, the shift to using online the Zoom platform created flexibility and increased participation.62,63 Participants were able to participate in the focus groups from many locations, including work, free time, or even while they ran errands. Similar to others,64 we have found that online focus groups extend the reach of recruitment efforts beyond a specific geographic area. Finally, drawing on group dialogues may help to heal the ongoing effects of trauma and harm.46 Focus groups continue to be opportunities for participants to witness the depth of commitment to support communities during COVID-19 and to challenge the existing social contracts that allow inequities to persist.

Conclusion

In this article, we offer a model for integrating critical theory into the conceptualization, methods, and dissemination of qualitative research conducted via Zoom in rapid response to the evolving pandemic. Strengths of this project include our adaptations of the methods to accommodate the realities of the populations of interest. The strategies address the assumptions embedded within the project and they inform the process of relationship-building among colleagues and partners who are doing vital social justice work for community health. From a CRT perspective, a strength of this article is the transparency with which we disclose the assumptions guiding each aspect of the work, how we see the world, and what position we take in the work we do. As public health critical race scholars, we are guided by the relevancy and urgency of our work, especially for racially marginalized communities. The crisis of the moment necessitates data to guide the immediate development of solutions; in addition, it is important to generate data that can support longer term equity and justice efforts.

The challenges and limitations discussed here are likely to evolve as the pandemic matures. At the same time, guided by principles rooted in equity and social justice, we find ourselves renewed in our commitment to support grassroots, community-based, power-building initiatives.65–67