Ascribing Meaning to Kidney Disease: A Qualitative Study of African Americans with a First Degree Relative on Hemodialysis

Chronic kidney disease (CKD) poses a serious health threat to African Americans (AA). CKD is responsible for the high incidence of end stage renal disease requiring hemodialysis among AA. CKD is a preventable condition associated with modifiable and non-modifiable risk factors. Having a family history of CKD is an independent non-modifiable risk factor for CKD yet many AA do not perceive CKD as a major health concern. Previous studies on CKD awareness and knowledge have not included the voices of individuals with a relative affected by CKD. The purpose of this interpretive phenomenological study was to explore the meaning of kidney disease in African American adults with a first degree relative on hemodialysis in an effort to gain a deeper understanding of their lived experience with CKD and their personal perspectives on kidney disease. In-depth face-to-face interviews were conducted with 8 women and 4 men, who ranged in age from 26 to 65 years old. Interviews were audio recorded and transcribed. Data analysis was conducted using an adapted version of Heidegger’s hermeneutic analysis process that involved continuous examination of the whole and the parts of the data for insightful discovery (Diekelmann, Allen, & Tanner, 1989). Two patterns and six major themes were identified. Pattern One was How We Relate, and its associated themes were: Communication, Comparison, and Bloodline. Pattern Two was Not Knowing — Now Knowing, and its associated themes were: Seriousness of Chronic Kidney Disease, What is Kidney Disease? and Staying Strong. Participants formulated their CKD health beliefs by processing, interpreting, and analyzing information received through interaction with their family members. They appraised their health as better than their affected family member and believed they could implement health protective behaviors to prevent CKD. Education, practice and research implications include: stronger public health risk campaigns based on the health language of AA, education models that engage patients in discussions about family health history, and a clear definition of what constitutes genetic risk for CKD and the relationship between genomics and personal risk appraisal