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Shawn Bediako, associate professor of psychology at the University of Maryland, Baltimore County (UMBC), has received a four-year, $854,000 grant from the National Institutes of Health (NIH) to study how stigma affects health behaviors and outcomes among adults living with sickle cell disease, the world’s most common genetic blood disorder. The research aims to explore associations between stigma and clinical outcomes that could change how health care providers understand what is often perceived as a “Black” disease.

People coping with a chronic illness undoubtedly feel different from others who are healthy. However, Bediako thinks that those who cope with a “racialized” chronic illness often experience additional stigma that makes them more susceptible to negative outcomes. Bediako points out that there is perhaps no other disease that is so closely associated with race.

“For decades, researchers have rightfully focused on sickle cell pain because it’s the most well-known characteristic of the condition,” Bediako said. “But other studies suggest that psychological factors are important in determining how people deal with pain and other physical aspects of the disease.”

The grant is an “Innovators in Hemoglobinopathies Academic Career Development” award, also known as a K07 Award, from the National Heart Lung & Blood Institute at NIH. The grant aims to advance the career development of scientists who have implemented innovative research programs for patients with genetic blood disorders.

“Dr. Bediako is highly dedicated to studying psychosocial aspects of sickle cell disease with the goal of improving the quality of life of those with this condition,” said Sophie Lanzkron, associate professor of medicine and oncology and director of the Sickle Cell Center for Adults at the Johns Hopkins School of Medicine, who is widely known for her work in understanding barriers to care for adult sickle cell patients. “The award offers him the opportunity to… position himself to become one of the pre-eminent scientists working in this field.”

Bediako will work closely with He will work closely with co-mentors Shari Waldstein, professor of psychology at UMBC, and Jennifer Haythornthwaite, professor of psychiatry and behavioral sciences at the Johns Hopkins School of Medicine, to identify different profiles of sickle cell disease stigma, evaluate how stigma changes on a daily basis and explore associations between stigma and clinical outcomes.

Bediako will also use the award to receive specialized training in biostatistics and clinical research at the Johns Hopkins Bloomberg School of Public Health and the Institute for Clinical and Translational Research.

Bediako’s previous research has examined psychological, social, and cultural aspects of sickle cell disease. Along with collaborators at the University of Cincinnati and Baylor College of Medicine, he recently developed the Measure of Sickle Cell Stigma, the first ever instrument designed to assess disease-specific stigma in this population.

“Most researchers have assumed that sickle cell was stigmatizing, but the evidence to support this assumption was mostly anecdotal. With resources from UMBC, we were able to conduct two pilot studies to show that stigma looks a lot differently than what people expect. This led our team to want to know more about the mechanisms – that is, how the experience of stigma leads to more pain and more hospitalizations,” he said.