While distress is well-documented in patients with sickle cell disease, sources of distress and how patients manage distress have not been well explored. Our study found that the most profound source of distress for patient with sickle cell disease in a home visit program was anticipating and going to acute care centers to manage their acute pain." Maryanna Klatt, PhD, senior study author, director of the Center for Integrative Health at The Ohio State University Wexner Medical Center Study findings are published in the journal Qualitative Research in Health .

These findings bolster researchers' earlier perspective published in the New England Journal of Medicine that cited a need for a biopsychosocial model to treat chronic pain in sickle cell disease. Researchers recruited 11 patients with sickle cell from a home visit program at Ohio State Wexner Medical Center between February and July 2021. They wanted to identify sources of distress for persons with sickle cell.

A researcher conducted one-on-one semi-structured interviews with study participants. The research team coded and analyzed all interview transcripts. Participants said the most profound source of distress was clinical encounters in the emergency department and intermediate care center to manage acute pain flares.

"We found that there is often a performative element for persons with sickle cell in emergency and intermediate care center settings. They feel they have to present in a certain way for providers to see.