Living with the Double-Edged Sword: A Qualitative Study of Navigating Leukemia within the Cancer Care System

Abstract Background Racial disparities persist in acute myeloid leukemia (AML) treatment and survival; however, little is known about how Black patients experience and navigate cancer care. This study explored the role of cancer care in health outcomes and the experiences of Black adults with AML navigating the cancer care system. Methods A qualitative study was conducted with 16 Black adults diagnosed with AML. Participants were recruited using purposive and convenience sampling from a comprehensive cancer center, cancer patient social network, and hospital cancer registry. Semi-structured interviews explored participants’ experiences with race, insurance, patient-clinician communication, treatment, finances, and supportive resources. The National Institute on Minority Health and Health Disparities Research Framework guided the study. Data were analyzed using thematic analysis. Results Participants ranged in age from 38 to 74 years (M = 57.7, SD = 11.57) and included 10 women and 6 men diagnosed with AML between 1980 and 2022. Five themes emerged: (1) the disadvantage of being Black with AML, (2) the importance of social support, (3) the privilege of receiving high-quality healthcare, (4) the significance of representation in healthcare settings, and (5) the shared experience of isolation. Participants described feeling dismissed, unheard, stereotyped, and disadvantaged when seeking care and perceived race as a barrier to finding a stem cell donor. In contrast, knowledgeable and supportive clinicians, family and community support, social workers, spiritual support, access to comprehensive cancer centers, and Black representation in healthcare settings facilitated cancer care. Participants also described isolation associated with AML and its treatment, with some identifying similarities between AML-related infection precautions and the COVID-19 pandemic. Conclusion Black adults with AML described cancer care experiences shaped by perceived racial disadvantage, healthcare interactions, social support, access to high-quality care, representation, and isolation. Findings highlight opportunities to improve patient-clinician communication, provide accurate information regarding contemporary stem cell transplantation options, strengthen supportive resources, and promote equitable healthcare interactions across the AML care continuum.