The Importance of Community Voice

Using Community-Based Participatory Research to Understand the Experiences of African American, Native American, and Latinx People During a Pandemic

Amanda Haboush-Deloye, PhD; Erika Marquez, PhD, MPH; Rebecca Dunne, BA; Jennifer R. Pharr, PhD

Prev Chronic Dis. 2023;20(3):E12

Abstract and Introduction

Abstract

Introduction: Although the disproportionate impact of COVID-19 infection, hospitalization, and death rates on racial and ethnic minority communities in the US is known, information about how COVID-19 has affected these communities and how community context and perceptions can inform a better response to future health crises needs further exploration. To help achieve these objectives, we used a community-based participatory research approach to gain a better insight into African American, Native American, and Latinx communities.

Methods: From September through December 2020, we conducted 19 focus groups and recruited 142 participants. Participants were selected via a purposeful sampling technique. We used a phenomenology study design to conduct semistructured interviews, thematic analysis to code qualitative data, and descriptive statistics to summarize demographic data.

Results: Data analysis revealed the following 3 themes: 1) COVID-19 exacerbated mistrust, anxiety, and fear in racial and ethnic minority populations, affecting their mental health, 2) understanding sociocultural context is essential for emergency response, and 3) adapting communication strategies can help address community concerns.

Conclusion: Amplifying the voices of people disproportionately affected by the COVID-19 pandemic can help to inform a better response to future health crises and ultimately reduce health inequity among racial and ethnic minority populations.

Introduction

In the US, hospitalizations due to COVID-19 have been 2.6 times higher among African American people, 2.5 times higher in Latinx people, and 3.3 times higher in Native American people than among non-Hispanic White people; additionally, fatalities due to COVID-19 have been higher in these populations.^[1] Reduced access to quality health care, inflexible low-wage employment, lack of paid sick leave, overrepresentation in correctional and immigration detention facilities, and overcrowded low-quality housing^[2] are a few of the long-standing structural inequities that have contributed to higher rates of COVID-19 infection, hospitalization, and death in racial and ethnic minority populations in the US.^[3–5]

To reduce health disparities exacerbated by COVID-19's disproportionate impact on racial and ethnic minority communities, it is imperative to first understand their experiences and needs. One way to engage diverse communities is by supporting and amplifying their voices through community-based participatory research (CBPR).^[6] CBPR strives to prioritize equity in the relationship between researchers and community-based organizations by practicing principles of co-learning, ensuring efforts have a mutual benefit, and making a long-term commitment.^[7] CBPR has been used across disciplines and issues to improve community outcomes.^[8] It provides the foundational principles to understand community context and concerns, informs strategies to better prepare for emergencies, and communicates risk among communities that are underresourced in terms of such necessities as food, clothing, shelter, and access to health care during times of crisis.^[9]

The objectives of this study were to describe how 3 racial and ethnic minority populations in Nevada were affected by COVID-19 and how community context and perceptions can inform a better response to future health crises.

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Abstract and Introduction
Methods
Results
Discussion
References
Sidebar

Table 1. Demographic Characteristics of Participants in Focus Groups Designed to Elicit Information on COVID-19 Experiences Among Participants From 3 Priority Populations — African American, Native American, and Latinx — in Las Vegas, Nevada, October–December 2020 ^a
Variable	Latinx (n = 78)	African American (n = 35)	Native American (n = 29)
Submitted demographic form	63	23	12
Age, y
18–30	8 (12.7)	7 (30.4)	6 (50.0)
31–50	38 (60.3)	9 (39.1)	1 (8.3)
51–64	12 (19.0)	3 (13.0)	4 (33.3)
≥65	2 (3.2)	2 (8.7)	0
Prefer not to answer	3 (4.8)	2 (8.7)	1 (8.3)
Education level
Less than 9th grade	10 (15.9)	0	0
9th to 12th grade, no diploma	8 (12.7)	0	0
High school diploma or GED	18 (28.6)	1 (4.3)	4 (33.3)
Some college, no degree	9 (14.3)	5 (21.7)	4 (33.3)
College degree	14 (22.2)	17 (73.9)	4 (33.3)
Prefer not to answer	4 (6.3)	0	0
Sex/gender
Male	1 (1.6)	7 (30.4)	3 (25.0)
Female	61 (96.8)	16 (69.6)	9 (75.0)
Prefer not to answer	1 (1.6)	0	0
Income, $
0	3 (4.8)	1 (4.3)	0
<14,999	10 (15.9)	1 (4.3)	0
15,000–24,999	8 (12.7)	0	2 (16.7)
25,000–39,999	11 (17.5)	2 (8.7)	2 (16.7)
40,000–54,999	4 (6.3)	6 (26.1)	1 (8.3)
55,000–79,999	1 (1.6)	4 (17.4)	2 (16.7)
80,000–109,999	2 (3.2)	5 (21.7)	1 (8.3)
≥110,000	1 (1.6)	2 (8.7)	2 (16.7)
Prefer not to answer	23 (36.5)	2 (8.7)	2 (16.7)
Home
Rent	42 (66.7)	15 (65.2)	5 (41.7)
Own	12 (19.0)	8 (34.8)	5 (41.7)
Prefer not to answer	9 (14.3)	0	2 (16.7)

Abbreviation: GED, General Educational Development.
^aAll values are number (percentage) unless otherwise indicated.

Table 2. Identified Themes and Subthemes in Focus Groups Designed to Elicit Information on COVID-19 Experiences Among Participants From 3 Priority Populations — African American, Native American, and Latinx — in Las Vegas, Nevada, October–December 2020
Theme and subtheme	Latinx	African American	Native American
COVID-19 exacerbated mistrust, anxiety, and fear among racial and ethnic minority populations, affecting their mental health
Increases in the following: fear, anxiety, stress, and social isolation	■	■	■
Fear of getting sick and leaving the house	■	■	■
Cancellation of activities pivotal to well-being	■	■	■
Increases in violence	■		■
Increases in protests and blatant displays of racism		■
Concerns of discrimination	■	■	■
Historical trauma		■	■
Lack of trust	■	■	■
Understanding sociocultural context is essential in an emergency response
Economic challenges	■	■	■
Immigration status	■
Crowded home conditions	■		■
Concept of "house"			■
Superstition		■
Machismo	■
Traditional medicine	■	■	■
Spiritual or religious beliefs	■	■	■
Adapting communication strategies can help address community concerns
Do not lie to the community; provide both the pros and cons of the vaccine	■	■	■
What are the side effects? Will the vaccine make someone sick?	■	■	■
What are the ingredients of the vaccine?	■
Be transparent; want to see the science behind it		■
Don't allow anybody to intimidate or force them to do anything; choice		■
If you get the vaccine, you protect yourself and the ones you love	■		■
Material needs to be in the native language	■

Box. Semistructured Focus Group Questions Designed to Elicit Information on COVID-19 Experiences Among Participants From 3 Priority Populations — African American, Native American, and Latinx — in Las Vegas, Nevada, October–December 2020
Topics and questions Topic 1: How has COVID-19 impacted community members? • If you are comfortable sharing, we would like to know how COVID-19 has impacted you and your community. • What are some challenges that you may have faced? • How do you think that you and your community might have been impacted differently compared with others because of your race/language barrier/immigration status? • How do you think members of your community might be more at risk for COVID-19? Topic 2: Case investigation and contact tracing • What are your perceptions about case investigation and contact tracing? What are some concerns? • There are some options for testing and tracking people who may have COVID-19 to help slow the spread of the virus. We are going to review a few of the options. For each, can you talk about if you would use it? And what concerns you have about it? • What information do you think we could share with members of the community to help address the negative perceptions about case investigation and contact tracing? • Overall, what cultural beliefs in your community may prevent someone from getting tested for COVID-19 or from participating in contact tracing? Topic 3: Opinions and planned behaviors regarding COVID-19 vaccine or vaccine hesitancy • Currently, companies are working on a COVID-19 vaccine. How do you feel about a potential vaccine? • What cultural beliefs in your community may prevent someone from getting the vaccine? • What trusted sources of information do you use to learn more about health care, COVID-19, treatments, and vaccines? • What factors or messages are important in talking to members of the priority population about a vaccine? • Is there anything else you would like to share about your community about COVID-19, testing, contact tracing, or a potential vaccine?