DUSON is working to combat inequities in access and quality of care
During the early stages of the COVID-19 pandemic, confusion about the virus, how it spreads, and how to stop transmission was rampant. But one thing was certain — the virus did not discriminate in who it infected. Everyone was at risk.
It soon became clear, though, that even though everyone had an equal susceptibility to infection, not all groups were showing the same infection rates. Like many other aspects of health care — cancer, heart disease, access to preventive services — there were health disparities associated with COVID-19.
It’s something that, unfortunately, occurs every day across the country in the health care system. African American, Latinx, Asian and Pacific Islander, and other racial and ethnic minorities encounter barriers to care — including lower incomes, inadequate housing, and lack of health insurance — that negatively impact both the quality of services they receive and their access to them. In many instances, these obstacles can result in distrust of the health care system and providers.
The health inequities produced by these barriers have long been recognized and have been the focus of research and community work for faculty and students at the Duke University School of Nursing (DUSON). However, the pandemic has shone a harsh light on how these social determinants of health are still perpetuating the deep chasms that limit access to services and lead to poor outcomes for these communities.
“COVID-19 has forced us to truly recognize the devastating effects caused by a lack of access to health care and the disproportionate impact this lack of access has across marginalized populations,” said DUSON Dean Marion E. Broome, PhD, RN, FAAN. “Given their frontline position in delivery of care, nurses are uniquely positioned to have a substantial impact on community health, improving health outcomes, and directly addressing these statistics.”
The COVID-19 Effect
It is safe to say that individuals across all populations in the United States and North Carolina have been affected by COVID-19. To date, according to the Centers for Disease Control and Prevention (CDC), there have been 24,422,854 cases nationwide, and racial data is available on 15,001,661 (61 percent) of those instances.
Based only on the data for infections, white communities accounted for 49.7 percent of cases, followed by Latinx groups at 29.5 percent and African Americans at 11 percent. The real picture comes into focus, though, and the health inequities become stark when you look at mortality from the virus. Nationally, despite only accounting for slightly more than 10 percent of cases, African Americans have accounted for 44 percent of hospitalizations and 35 percent of COVID-19 deaths. In New York City alone, African American and Latinx patients have died at two times the rate of white patients.
The situation in the community surrounding DUSON — Durham, North Carolina — has mirrored the national story. In May 2020, during the early months of the pandemic, African American residents were 40 percent less likely to be tested for viral infection, but when they were screened, they were two times as likely as white residents to test positive. And, while Latinx individuals account for 14 percent of the Durham County population, they made up 63 percent of its cases.
The reasons behind the differences in how the virus has impacted these patient groups are not new, but the effect has clearly been significant.
For African Americans, a significant amount of the disparities during the pandemic have been exacerbated by distrust of the health care system and fear, according to Ragan Johnson, DNP, MSN, APRN-BC, assistant professor.
“We have seen many people avoid getting regular primary care check-ups, resulting in delays to preventative tests and timely refills on medications,” said Johnson, who is co-principal investigator on efforts within DUSON to reduce health care disparities around HIV in the African American community. “Additionally, we have also seen people avoid emergency or urgent care visits because of fear of contracting COVID-19 in those high-risk settings.”
Fear has been a significant factor for Latinx patients, as well, said Irene Felsman, BSN’76, DNP, MPH, RN, C-GH, assistant professor. But that fear of disease is combined with other concerns.
“Whether it’s lack of health insurance or an inability to work following a positive diagnosis, the economic consequences related to COVID-19 can be steep,” said Felsman, who is a co-investigator on the SER Hispano research team and an affiliate of the Duke Global Health Institute. “Access to care for the Latinx population is fraught with disparities — low English literacy skills, low-income employment in crowded conditions, insecure and crowded housing situations, and in certain cases, insecure immigration status leading to a fear of deportation and separation from family members.”
Unfortunately, even the measures put in place to help combat COVID-19 could not sidestep these existing disparities, both Johnson and Felsman said.
Testing for the virus ramped up quickly in Durham, but most testing sites were located in more affluent areas that would require travel for many African American and Latinx individuals who suspected they might have been exposed and infected. In addition, most testing sites were drive-through, and they operated during work hours, increasing difficulty for patients who rely on public transportation or who do not have flexibility during the workday, Felsman explained.
Implementing telehealth visits has been viewed as a great way to assess patient symptoms and conditions while keeping patients isolated and providers safe. However, these remote visits require an internet connection, as well as the technical savvy to schedule and navigate an online medical appointment, Johnson said. Relying on technology has also impeded the access African American and Latinx individuals have had to the vaccine. Most appointments are made via a smartphone, but many in these groups do not have those tools.
“The process for registering for a vaccine has been an issue,” she said. “We have to think of ways that meet the needs of all communities when we roll out vaccines.”
And, as simple as it sounds to make social distancing the go-to tactic for fighting viral spread, abiding by it is not that easy, Felsman said. Many Latinx families live in multi-generational homes where isolating and staying distanced from others can be nearly impossible. Maintaining a safe space and practicing hygiene measures, such as handwashing, can also be difficult in the agricultural and housekeeping jobs that many individuals in these groups hold.
In fact, Johnson noted current research indicates that the ability to social distance is rapidly becoming a new social determinant of health. “We don’t always think about the privilege in being able to work from home at the height of the pandemic or having everyone in your home be able to do the same,” she said.
Fortunately, Johnson and Felsman said, through several community-based collaborations with African American leaders and with Latin19 (Duke’s Latinx Advocacy Team & Interdisciplinary Network for COVID-19), DUSON has been able to effectively disseminate information about preventive care during the pandemic, as well as encourage vaccine uptake.
DUSON’s Fight Against Health Disparities
While efforts to fight the inequities in COVID-19 care are critical, they do not supersede the need to address disparities affecting African American and Latinx patients in other areas of health care. DUSON faculty are acutely aware of the difficulties these communities face, and they are working to address these concerns and bring about better health outcomes.
African American Patients
In the United States, sickle cell disease (SCD) occurs predominantly among people of African descent. Affected people can experience devastating and sometimes life-threatening complications including severe pain episodes, strokes, acute chest syndrome, and organ damage.
These serious complications can lead to a high number of hospitalizations, emergency department visits, and associated costs.
Several DUSON faculty members are conducting research to improve health care services and improve lives for individuals with SCD. Vice Dean for Research and Laurel B. Chadwick Distinguished Professor Paula Tanabe, PhD, MSN, MPH, RN, FAEN, FAAN, and team are working with eight emergency departments (ED) across the United States to implement individualized pain plans to treat acute pain in the ED. This is the first study to make these plans available to both the patient in their patient portal electronic health record, and the ED provider.
Assistant Professor Nancy Crego, PhD, RN, CCRN, CHSE, is currently investigating how patient laboratory data could be incorporated into individualized feedback that could inform and improve SCD patient medication adherence. Her work is also exploring the use of opioid prescriptions in children and adolescents with SCD, aiming to help avoid complications and misuse later in life.
To develop ways to promote disease self-management for people living with SCD, post-doctoral fellow Dominique Bulgin, PhD’19, is working with Tanabe to pilot test a telehealth shared medical appointments program. In addition, Mariam Kayle, MSN’05, PhD’17, RN, CCNS, assistant professor, in collaboration with the North Carolina Department of Health and Human Services, is designing a high-quality, state-wide, population-based SCD surveillance program that can help invested stakeholders determine the epidemiology of SCD in the state and how patients are utilizing health care services.
DUSON faculty are also addressing another significant health concern for the African American community — HIV infection. The stigma associated with the virus is substantial, and it can lead to ineffective prevention efforts, lower medical adherence, less retention to care, and worse disease outcomes. Associate Dean for Global and Community Affairs Michael Relf, PhD, RN, is designing interventions aimed at improving patient engagement in HIV-oriented primary care services.
To that end, Schenita Randolph, PhD, MPH, RN, CNE, assistant professor, has created a salon-based initiative to increase awareness of the importance of pre-exposure prophylaxis (PrEP) — a medication that is effective in reducing the likelihood of HIV infection — among African American women. Making sure these women know about and understand this medication is critical because they account for 64 percent of all new infections among women nationwide, and women in the South are at greatest risk.
Latinx Patients
As with efforts surrounding African American patients, Rosa Gonzalez-Guarda, PhD, MPH, RN, CPH, FAAN, associate professor, is investigating the impact COVID-19 has had on how young Latinx immigrants practice prevention behaviors and seek medical help when it is needed. Her efforts are intended to help create prevention strategies that can combat the existing health disparities with the virus.
In addition, Gonzalez-Guarda is driving efforts to increase the number of Latinx individuals involved in research. Currently, they account for 17 percent of the U.S. population, but they only make up 8 percent of participants enrolled in the National Institutes of Health clinical trials. Reversing that under-representation is critical to being able to effectively address the disparities this community faces around cancer, cardiometabolic disease, and mental health.
All of these efforts have the potential to go a long way in combatting and minimizing the effects of the existing health disparities that have plagued racial and minority populations for generations. With the infrastructure and funding in place to investigate how best to meet the needs of these communities, DUSON is well positioned to ride the wave of awareness created by the lingering COVID-19 outbreak.
“We cannot lose the momentum and the public attention that has been created [during the pandemic] regarding the disparities for black, indigenous, and people-of-color communities,” Felsman said. “We are engaged in real work that is creating lasting, concrete solutions.”
May 6, 2021
By Whitney J. Palmer