By Clarissa Donnelly-DeRoven
From higher infection and hospitalization rates to disproportionate death rates, the COVID-19 pandemic hit people of color hard. Many academic studies and journalistic accounts have documented and analyzed why this might’ve been, but fewer pieces of academic research have looked at the subjective experiences of people from these marginalized communities who got sick with the SARS CoV2 virus.
A new study from Duke University aims to start filling that gap. The researcher-clinicians who did the study interviewed Black and Latino North Carolinians who fell ill with COVID-19 during the first year of the pandemic. They asked a range of questions: what did the patients know about the virus before their infection? What were their experiences getting tested and seeking medical care while they were sick? What lasting impact has the virus had on their well-being?
The patients’ descriptions help provide insight into how medical and other systems failed to consistently reach these communities during the first phases of the pandemic. The goal is to provide suggestions for how health care officials and providers can do better in the future.
“This is no different than hypertension and diabetes,” said John Purakal, an emergency medicine physician at Duke and one of the co-authors of the study. “It’s just finding how do we communicate things that are highly scientific, and get it so that everybody that needs to understand it, can understand it.”
The goal, Purakal said, is to avoid having to explain to somebody who’s already sick why they got sick. Rather, “How do we prevent it from happening?”
A spectrum of knowledge
The results come from interviews with 10 people who sought care for COVID-19 at a Duke facility — either a regional clinic or the emergency department itself — between March 2020 and February 2021. Though quantitative studies have much larger sample sizes, qualitative studies successfully find results with far fewer people.
Overall, the researchers found participants’ experience with the virus — from knowledge beforehand to treatment during — varied widely. As in the general population, some people thought the risk the virus posed to them was overblown, while others described trying to follow all the protocols published by the Centers for Disease Control and Prevention as closely as they possibly could.
People had significant differences when it came to their knowledge about the virus. One participant wasn’t familiar with some of the symptoms, which caused him great distress when he tested positive for it.
“I thought I had a breathing problem,” he told the researchers. “All of a sudden they shot something in my nose [referring to the COVID testing swab] and three minutes later, I got COVID.”
“I didn’t go there for no COVID. I didn’t go there to take no test,” he said. “I’m so disgusted with that place. And I went with that place for 18 years of my lifetime. We can carry on this conversation about something else, but I am just letting you know how I really felt about how they told me after the fact that I had COVID.”
Hearing accounts such as this from residents made the clinicians conducting the study realize that, going forward, they needed to be extremely careful with their assumptions about patients’ existing knowledge.
“You kind of assumed after a while, like, ‘you guys have seen the news, you know what’s going on,’” Purakal said. “But no. Everybody’s sources of information are completely different.”
“Being an emergency provider, sometimes we don’t have the time to dedicate to really educate people on what is going on, and why were they at risk, or why did X, Y and Z happened to them?” he said. “You have to go in and assume that they haven’t been told anything and then let them fill you in.”
This need for education can apply to diseases beyond COVID-19 — diabetes, hypertension, cancer.
“You’ll never regret going in and basically asking them what you understand about how this happened and how you got the disease and what happens from here,” Purakal said.
Mixed experiences with treatment
While some patients had very little background on the virus, others were extremely up-to-date with the latest information and tried to advocate for themselves. One person described going to the hospital as her symptoms got worse, only to be turned away.
“I tried to explain to them what I felt like with the diagnosis of pneumonia with COVID, that I felt like I should stay in the hospital but they were saying that, you know, I could be managed at home,” the woman told the researchers. “They explained to me that the health department would be following me, calling me every day and if I was—if I was to get worse, I was to come back.”
She was eventually admitted to the hospital, but during that experience, too, she felt as though she was ultimately discharged too early.
“I was pretty angry about the care,” she said, “The decision to send me home.”
Despite these particular experiences, half of the participants said they had a positive experience getting care.
The participants as a whole didn’t describe feeling as though they received worse treatment because of their race, but two did describe how past examples of racism in medicine impacted their perception and behavior. One interviewee said knowledge of the Tuskegee syphilis study had fueled their concern. The Tuskegee study was a federal public health experiment which started in 1932 where researchers did not tell Black study participants that they had syphilis, nor did they offer them treatment that became available in 1943. Instead, they allowed the men’s infections to continue in order to observe the effects of the untreated disease. The study lasted until 1972.
Another participant said their concern and skepticism extended to the vaccine: “I’m not 100% sure if I’m gonna get it or anything like that, because I don’t know. . . It’s just a lot going on, being that I’m African American.”
Quarantine and mental health challenges
Many of the participants said they struggled to stay separated while sick. Two participants said they didn’t have sufficient space in their house to isolate themselves from others. Others said that even though they did have space to themselves, they needed to have regular contact with at least one other person in their house — a spouse, an adult child — to care for them.
Other counties, such as South Korea, recognized early on how complicated the logistics of quarantining would be for residents who were exposed to the virus, and how improper isolation for those who became infected would lead to further community spread. When people in that country tested positive for COVID-19, they were sent to a hotel or other facility for the duration of their illness. There, they received three meals a day along with regular medical monitoring.
This finding stuck with Justine Seidenfeld, a fellow in emergency medicine at Duke, and the study’s lead author.
“It’s certainly simple for us as physicians to give the current guidelines about however many days you need to quarantine or isolate yourself,” she said. Hearing these experiences helped her see how complicated this request was for patients to follow.
Participants also described long lasting impacts to their mental health and finances from their bout with COVID-19. Many said they’d lost work or were behind on bills, which fueled their stress and anxiety levels — emotions that were already high because they were living through an unprecedented global pandemic.
“These findings are aligned with prior work and calls for more efforts to mitigate the so-called ‘second pandemic’ of COVID-19,” the authors wrote. There is widespread concern that the nation’s mental health systems, which were already overloaded and underfunded pre-pandemic, will buckle under the added strain.
“While these patients receive emotional support from friends, family, and community groups,” they wrote, “It is incumbent upon the healthcare field to recognize the need to invest in resources to meet these patients’ needs.”