Informal Advance Care Planning with Family in Blacks with End Stage Renal Disease on Hemodialysis

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Project Summary Chronic kidney disease affects 15% of the population in the United States, resulting in greater than 30 million people affected and over half of this population requires treatment with hemodialysis to replace the function of the renal system. The mortality rate at one and three years after hemodialysis initiation is 16% and 43%, respectively. Additionally, Blacks are 2.9 times more likely to be diagnosed with end stage renal disease (ESRD) when compared to Whites. Due to this racial disparity and associated mortality in ESRD, advance care planning (ACP) is of extreme importance for this population because of its association with high quality care at the end of life. Formal ACP is defined as a written advance directive that states preferences for care or treatment near the end-of-life and/or a written document that designates a surrogate decision maker should one become incapacitated called a healthcare power of attorney. The prevalence of ACP has been primarily assessed by written advance directives, and Blacks are more likely to engage in informal ACP with family, that is discussions without the associated written documents. Therefore, Blacks are largely underrepresented in ACP research. If more were known about the factors associated with informal ACP in Blacks, interventions could be developed to enhance the content and rate of Informal ACP in Blacks with ESRD on hemodialysis. Guided by a conceptual framework that illustrates the multiple factors that impact ACP in Blacks, a sequential explanatory mixed methods study design will be used to examine and explore the relationships between personal, interpersonal, and structural factors and the engagement of family in informal ACP among Blacks with ESRD on hemodialysis. The following specific aims are proposed Aim 1: To examine the relationships between personal factors (illness perception, expectations of end stage renal disease and hemodialysis treatment), interpersonal factors (religiosity, spirituality, and social support), and structural factors (health literacy and trust in healthcare) and whether Blacks with ESRD on hemodialysis engage family in informal ACP. Aim 2:To explore the context of informal ACP with family among Blacks with ESRD on hemodialysis. Aim 3: To comprehensively describe how factors identified in aims 1 and 2 impact informal ACP with family among Blacks with ESRD on hemodialysis. The proposed study is in alignment with the strategic plan of the National Institute of Nursing Research, to understand healthcare decision making across the lifespan for those with advanced illness and those suffering from disparities in health. The results of this study will contribute new knowledge on informal ACP with family in Blacks with ESRD on hemodialysis, leading to the development of culturally sensitive measures of informal ACP and the development of future interventions to increase the rate and content of informal ACP with family.