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

项目摘要 慢性肾脏疾病影响美国15%的人口，导致3000多万人死亡 受影响的人和超过一半的人口需要血液透析治疗，以取代 肾脏系统。血液透析后一年和三年的死亡率分别为16%和43%， 分别进行了分析。此外，黑人被诊断为终末期肾病的可能性是后者的2.9倍 (ESRD)与白人相比。由于ESRD的种族差异和相关死亡率，高级护理 规划(ACP)对这一人群极其重要，因为它与高质量的医疗保健有关 地老天荒。正式的ACP被定义为书面的预先指令，说明对护理或 临终治疗和/或指定代孕决策者的书面文件应 其中一种被称为医疗保健委托书。非典的流行主要是 通过书面的提前指示进行评估，黑人更有可能与家人进行非正式的ACP，即 在没有相关书面文件的情况下进行讨论。因此，黑人在很大程度上代表不足 非加太研究。如果更多地了解与黑人非正式ACP相关的因素，干预措施 可以开发来提高患有ESRD的黑人的非正式ACP的含量和比率 血液透析。在一个概念框架的指导下，该框架说明了影响黑人ACP的多种因素， 将使用顺序解释性混合方法研究设计来检验和探索 个人、人际和结构因素与家庭投入的关系 黑人终末期肾病患者血液透析中的非正式ACP。提出了以下具体目标 1：检查个人因素(疾病认知、对终末期肾病的期望)之间的关系 疾病和血液透析治疗)、人际因素(宗教信仰、精神信仰和社会支持)，以及 结构性因素(健康素养和对医疗保健的信任)以及患有终末期肾病的黑人是否需要进行血液透析 让家人参与非正式的非正式会议。目的2：探讨非正式ACP在黑人家庭中的背景 终末期血液透析。目标3：全面描述目标1和2中确定的因素如何影响 黑人终末期肾病血液透析患者与家人的非正式ACP。建议的研究与 国家护理研究所的战略规划，以理解医疗决策 对于那些患有晚期疾病的人和那些在健康方面存在差异的人来说，在整个生命周期内都是如此。结果是 这项研究将对终末期肾病黑人血液透析患者家庭非正式ACP提供新的认识。 导致制定对文化敏感的非正式非加太项目措施，并发展 未来的干预措施，以增加与家庭的非正式ACP的发生率和内容。

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.