“I Try Not to Even Think About My Health Going Bad”: a Qualitative Study of Chronic Kidney Disease Knowledge and Coping Among a Group of Urban African-American Patients with CKD

Abstract

Context: African-Americans with chronic kidney disease (CKD) are more likely to progress to end-stage renal disease (ESRD). However, African-Americans are less likely to receive care to delay progression of their CKD and to prepare for ESRD treatment. Objective: The objectives of the study are to understand knowledge among urban, African-American patients diagnosed with CKD and to discover ways they managed their illness and prepared for kidney disease progression. Design: A qualitative study was conducted using structured interviews. Thematic analysis was used for data interpretation. All 23 participants identified as African-American and had CKD but had not yet reached ESRD requiring renal replacement therapy (RRT). Over half of the participants were women (57%), and the mean age was 53 years old. Results: Three themes emerged from the data. African-Americans often did not know the severity of their CKD. They struggled to complete all of the diet, exercise, and medication tasks recommended to manage their health conditions, including CKD. Finally, participants, even those with stage 5 CKD, viewed progression to RRT in the next 12 months as unlikely. Conclusion: African-Americans face many barriers to CKD self-care and preparation for ESRD. Improving outcomes requires clinicians to help patients understand the severity of their CKD, to make informed choices about their care, all the while motivating patients to take actions to prevent CKD progression.