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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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1
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.

Abstract

BACKGROUND:

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.

OBJECTIVE:

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

METHODS:

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.

RESULTS:

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.

CONCLUSIONS:

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

IMPLICATIONS FOR PRACTICE:

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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