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Cancer Nurs. 2019 Oct 18. doi: 10.1097/NCC.0000000000000750. [Epub ahead of print]

Reflections of Healthcare Experiences of African Americans With Sickle Cell Disease or Cancer: A Qualitative Study.

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Authors Affiliations: Department of Biobehavioral Nursing Science, College of Nursing, University of Florida, Gainesville (Drs Dyal, Duckworth, Yao, Wilkie, and Ezenwa and Mss Abudawood, Schoppee, Jean, Smith, Greenlee, and Staton); King Saud bin Abdulaziz University for Health Sciences Scholar, Jeddah, Saudi Arabia (Ms Abudawood); and Community Hospice and Palliative Care, Jacksonville (Ms Schoppee); and Center for Palliative Care Research & Education (Drs Wilkie, Ezenwa, Yao, Duckworth, Dyal, Black, and Mandernach and Mss Schoppee, Jean, Smith, Greenlee, and Staton) and Division of Hematology/Oncology, Department of Pediatrics (Dr Black), and Department of Medicine (Drs Heldermon and Mandernach), College of Medicine, University of Florida, Gainesville.



The experiences of African American adult patients before, during, and after acute care utilization are not well characterized for individuals with sickle cell disease (SCD) or cancer.


To describe the experiences of African Americans with SCD or cancer before, during, and after hospitalization for pain control.


We conducted a qualitative study among African American participants with SCD (n = 15; 11 male; mean age, 32.7 ± 10.9 years; mean pain intensity, 7.8 ± 2.6) or cancer (n = 15; 7 male; mean age, 53.7 ± 15.2 years; mean pain intensity, 4.9 ± 3.7). Participants completed demographic questions and pain intensity using PAINReportIt and responded to a 7-item open-ended interview, which was recorded and transcribed verbatim. We used content analysis to identify themes in the participants' responses.


Themes identified included reason for admission, hospital experiences, and discharge expectations. Pain was the primary reason for admission for participants with SCD (n = 15) and for most participants with cancer (n = 10). Participants of both groups indicated that they experienced delayed treatment and a lack of communication. Participants with SCD also reported accusations of drug-seeking behavior, perceived mistreatment, and feeling of not being heard or believed. Participants from both groups verbalized concerns about well-being after discharge and hopeful expectations.


Race-concordant participants with SCD but not with cancer communicated perceived bias from healthcare providers.


Practice change interventions are needed to improve patient-provider interactions, reduce implicit bias, and increase mutual trust, as well as facilitate more effective pain control, especially for those who with SCD.

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