Lending the Anthropological Perspective to Patient Care and Education
For the past four years, students in the Department of Anthropology have been conducting research aimed at improving health care and education for individuals with sickle cell disease. Under the guidance of assistant professor Crystal Patil, undergraduates and graduates in her Sickle Cell Research Group have worked with patients, families and caregivers in the Chicago metropolitan area to gather and analyze data—and make a difference.
Crystal Patil (back row right) and student researchers Rebekah Ciribassi (back left), Dylon Busser (back center), Romeo Love (front left) and Kristen Little (front right). Photo by Micki Leventhal
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Sickle cell anemia is an inherited blood disorder. It is caused by a defect in the production of hemoglobin that causes red blood cells to be misshapen—sickle-shaped. Effects of SCD include chronic anemia and episodes of sudden and extreme pain. Long-term effects include vision loss and damage to tissues and other vital organs.
Particularly common among individuals with sub-Saharan ancestry, sickle cell anemia affects millions of people worldwide. According to the Centers for Disease Control, between 80,000 and 100,000 Americans have the disease, including one in every 400 African Americans. The disease, and how it impacts quality of life for patients and families, is generally poorly understood.
Searching for a better understanding of his patients’ experiences and needs, Robert Molokie, MD, an associate professor of medicine and physician at the UIC Sickle Cell Center, approached Patil in 2008 seeking a partnership with anthropology.
“At the time I knew nothing about SCD. I did see a good opportunity to provide undergraduates with a local research project that would give them a taste of what anthropologists actually do. The project would have an applied outcome and the students would experience being anthropologists, not just reading anthropology,” said Patil, who joined the UIC faculty in 2007 and is currently the coordinator of the Anthropology and Global Health Program.
Crystal Patil. Photo by Micki Leventhal
“I was teaching a course called ‘Anthropology of Children and Childhood’ and I included a mini methods course within it. There were 20 students in the class and they were each required to conduct two interviews at either the pediatric or adult sickle cell clinics. They combined the results of their data, identified a number of themes and provided reports that revealed some insights into the lives of SCD patients. The students enjoyed this experience and they were so proud that they had a valuable end product. I knew I needed to make this happen more often.
Our students also learn to communicate with people from various backgrounds and hold their own.
“Three of the students stayed on the project but directed the research to their own interests. They were the first set of students from the SCD research group to graduate; they walked in 2009 with their degrees in anthropology. Dan Schneider, who is now on full scholarship at CUNY working on his PhD in anthropology, focused on children’s pain experience; Erin Jacobson worked with adult sufferers, documenting variations in pain experience; Costadina Aneziris, who is now in the UIC pharmacology program, looked at patients’ medication choices—describing if and when they used prescription medication or complementary and alternative medicine.”
“Students learn qualitative research methods and almost everyone conducts face-to-face interviews,” said Patil. “We also conducted focus group interviews with clients, in order to create an anthropological foundation for other projects with epidemiological and clinical relevance.”
In 2008, the program expanded and now incorporates research with community organizations including the Have a Heart for Sickle Cell Anemia Foundation, the UIC Support Group run by the UIC Sickle Cell Disease Center, and the Sickle Cell Disease Association of Illinois. Patil recently received an institutional award from Illinois Violence Prevention Authority to design a program for support groups, called Centering Sickle Cell Disease, and to deliver a school-based program. Both initiatives are aimed at reducing stigma around chronic SCD and bullying.
“Our students also learn to communicate with people from various backgrounds and hold their own. You can learn about this in a classroom, but it’s a skill that develops only out of experience and qualitative research allows that to happen,” said Patil. “Students learn the entire research process—from ethics, grant writing for programs like the LAS Undergraduate Research Initiative (LASURI) award, and dissemination. Along the way, they also become more comfortable with people and generally more adaptable—even for experiences like job interviews.”
Most recently, anthropology alumni Kristen Little (2012), Rebekah Ciribassi (2012) and Romeo Love (2011), and current LAS student Dylon Busser have worked with Patil in her Sickle Cell Research Group. Get to know them here!