Editor's Note: This is part two of our two-part Black History Month feature. The first part addresses our commemoration of Black History Month and representation in nursing.

Every February, the nation uplifts the contributions of and reflects upon the struggles and experiences of the African American/Black community during Black History Month. This year’s national theme, Black Health and Wellness, resonates with longstanding research and practice at Duke University School of Nursing, where faculty, staff and students are dedicated to addressing health issues that disproportionately affect Black and African American populations and are designing nurse-led models of care help to reduce such health disparities.  

Sickle cell disease, a group of rare, inherited red blood cell disorders, impacts around 100,000 of the more than 332 million U.S. population. One of every 365 of those Americans are Black or African American births, and about 1 in 13 Black or African American babies are born with the sickle cell trait. Individuals with the condition suffer a severely shortened lifespan, often only surviving to their mid-40s.

Sickle cell researchers at the School of Nursing have observed this disparity throughout their work and are addressing sickle cell patient care and treatment.  

“Our multi-disciplinary team conducts research to improve treatment of pain and quality of life, leads a registry of sickle cell disease patients at Duke and across the United States, and leads disease surveillance work in North Carolina. This is critical work being led by nurses,” said Paula Tanabe, PhD, MSN, MPH, RN, FAEN, FAAN, vice dean, research, and Laurel Chadwick Professor of Nursing. 

Addressing Pain Management  

Nancy Crego, PhD, RN, CCRN, CHSE, assistant professor, Rita Masese, associate in research, Tanabe and Christian Douglas, DrPH, consulting associate, conducted a study with other Duke researchers that took a multi-method approach to discover how patients with sickle cell disease in North Carolina perceive the care they receive in emergency departments. A survey and interviews were conducted; the majority of the survey’s respondents were Black.  

People with sickle cell disease experience many complex chronic conditions as well as acute and chronic pain. Often, these individuals must seek pain relief and treatment with opioids in an emergency department. 

Experiencing pain was the consistent reason the study’s participants—and sickle cell disease patients in general—go to the emergency department, with most participants adding that they only go as a last resort.  

In the study, several participants stated that emergency providers often don't take their pain seriously and accuse patients of being deceptive about their pain level or associating the visit to the emergency department with the purpose of the patient obtaining drugs. This disbelief results in the patient’s untreated pain and a deepening of stigma. 

Tanabe has led research to improve the treatment of acute pain for individuals with sickle cell disease in the emergency department for over 15 years. Her previous work determined that using individualized opioid pain protocols resulted in better pain relief when compared to a weight-based opioid dosing plan.  

Tanabe is now leading a team that is testing implementation of individualized pain protocols in eight emergency departments across the U.S. This is the first trial that would make individualized pain plans accessible through patient portals. If the trial succeeds, patients would be able to walk into any emergency department in the U.S. and have a documented pain plan for the provider to consult, helping to improve patient outcomes.  

Mitchell R. Knisely, PhD, RN, ACNS-BC, PMGT-BC, assistant professor, is serving as a multi-principal investigator on a large NIH-funded, multi-site pragmatic clinical trial that is assessing an alternative way to mitigate the pain—acupuncture. Since acupuncture has been shown to be effective for chronic pain in other populations, Knisely and team wanted to widely test its effectiveness on patients with sickle cell disease. A pilot study with Black participants found promising success in implementing acupuncture in adults with sickle cell disease. The study with which Knisely is involved is in its second year and is actively recruiting participants through the Duke Adult Sickle Cell Clinic. 

Sickle Cell Disease Globally 

While sickle cell disease affects millions of people worldwide, it disproportionately affects individuals with ancestors from regions such as sub-Saharan Africa, on which Assistant Professor Stephanie Ibemere, PhD, RN, conducts some of her research with her partner Cheedy Jaja, associate professor at the University of South Carolina School of Nursing. 

In a presentation to the National Black Nurses Association, Ibemere proposed a nurse champion model as a method to increase capacity for genetic counseling in sub-Saharan Africa, improve the communication of genomic information to individuals and family members with limited health literacy, and to better understand the needs of individuals and their family members as it relates to communication about genomic information.  

Nurse champions are seen as crucial to implementing best practice guidelines in their health care facilities, as they are passionate providers who help to promote health interventions. The current model Ibemere outlined also allows for implementation of task shifting initiatives for clinical genetic services in the U.S., which would particularly benefit people of color who don't have access to genetic testing in their areas.  

National Surveillance 

Currently, there is a lack of national surveillance data on the epidemiology, health care needs and financial impact of sickle cell disease in the U.S. To address this situation, Mariam Kayle, PhD, RN, CCNS, assistant professor, is serving as a co-principal investigator on project to implement a high-quality, statewide, population-based sickle cell disease surveillance program in North Carolina known as the North Carolina Sickle Cell Data Collection Program.  

Supported by funding from the Centers for Disease Control and Prevention (CDC), the program is a partnership between the School of Nursing and the North Carolina Department of Health and Human Services. The CDC has funded similar programs in 10 other states. Reports on the epidemiology and health care utilization patterns for sickle cell disease will be produced and delivered to stakeholders and the CDC. This data will identify health care needs of people with sickle cell disease and inform health care policy in North Carolina.