"I Won't Put Myself or My Family Through That": Decision Preferences, Family Experiences, and Kidney Disease Decision-Making

Abstract Background and Objectives Chronic kidney disease (CKD) is a major public health concern that uniquely impacts older Black Americans, a population also likely to have family members also diagnosed with CKD. This study aimed to (1) describe how participants viewed their decision preferences considering the experiences of family, and friends previously diagnosed with CKD, and (2) to understand how these social complexities informed their own decisions for future CKD care. Research Design and Methods Utilizing a phenomenologically-informed approach, this study explored participants’ perceptions of how patients and their family members’ experiences with CKD influenced treatment-related decision-making. A reflexive, thematic content analysis was conducted to identify patterns across participant responses (N=52). Participants were pre-dialysis, diagnosed with stage four or five chronic kidney disease, and were receiving outpatient nephrology care at a large, urban midwestern hospital. Results Three primary themes emerged: (1) uncertainty regarding decision-making, (2) lived experience of racism, and (3) impact of quality of care, information, and education on decision-making. These three interconnected themes centered on factors that influenced why and how decisions related to chronic kidney disease were made and how racial identity and prior family experiences with CKD influenced these decisions. Discussion and Implications Over the next 40 years, the population of Black Americans aged ≥ 65 years will nearly triple. Because of the complex support requirements and burden(s) of care for CKD patients, there are implications for reshaping the negative and disorienting narratives that influence decision-making conflicts.