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

患有终末期肾病血液透析的黑人家庭的非正式预先护理计划

• 批准号: 10300426
• 负责人: Marlena Camille Fisher
• 金额: $ 4.6万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-01 至 2023-10-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10300426
• 关键词: Adoption; Advance Care Planning; Advance Directives; Affect; Anxiety; Baltimore; Bereavement; Blood; Chronic Kidney Failure; Clinic; Communities; Conflict (Psychology); Decision Making; Development; Diagnosis; Disease; Distress; Documentation; End stage renal failure; Family; Friends; Future; Health; Healthcare; Healthcare Power of Attorney; Hemodialysis; Individual; Intervention; Kidney Failure; Knowledge; Longevity; Marriage; Measurement; Measures; Medicare; Mental Depression; Methods; National Institute of Nursing Research; Participant; Patients; Persons; Phase; Population; Prevalence; Quality of Care; Race; Renal function; Reporting; Research; Research Design; Risk; Sampling; Social support; Spirituality; Strategic Planning; Structure; System; Time; Trust; United States; advanced disease; base; care preference; design; end of life; end-of-life decision making; expectation; health disparity; health literacy; illness perceptions; mortality; preference; racial disparity; recruit; surrogate decision maker

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.

项目摘要 慢性肾脏疾病影响美国15%的人口，导致超过3000万人患有慢性肾脏疾病。 受影响的人，超过一半的这一人口需要血液透析治疗，以取代功能， 肾脏系统血液透析开始后1年和3年的死亡率分别为16%和43%， 分别此外，黑人被诊断为终末期肾病的可能性是黑人的2.9倍。 与白人相比，由于ESRD的种族差异和相关死亡率， 计划（ACP）对这一人群至关重要，因为它与高质量的护理有关， 生命的终结正式的ACP被定义为一份书面的预先指示，说明对护理的偏好， 接近生命末期的治疗和/或指定替代决策者的书面文件应 一个成为无行为能力称为医疗保健委托书。ACP的患病率主要是 通过书面预先指示进行评估，黑人更有可能与家人进行非正式的ACP， 是没有相关书面文件的讨论。因此，黑人在很大程度上代表性不足， ACP研究。如果更多地了解与黑人非正式ACP相关的因素， 可以开发，以提高非正式ACP在黑人ESRD的内容和比率， 血液透析。在说明影响黑人ACP的多种因素的概念框架的指导下， 一个连续的解释性混合方法研究设计将被用来检查和探索 个人、人际和结构因素与家庭参与之间的关系 接受血液透析的ESRD黑人患者中的非正式ACP。提出了以下具体目标 1：检查个人因素（疾病感知、终末期肾病的预期）之间的关系 疾病和血液透析治疗），人际因素（宗教信仰，精神和社会支持），以及 结构性因素（健康素养和对医疗保健的信任）以及是否有接受血液透析的ESRD黑人 让家庭参与非正式的ACP。目的2：探讨非正式ACP与黑人家庭的背景， 终末期肾病血液透析。目标3：全面描述目标1和目标2中确定的因素如何产生影响 非正式ACP与家庭在黑人与ESRD血液透析。拟议的研究符合 国家护理研究所的战略计划，以了解医疗保健决策 对于那些患有晚期疾病和健康状况不佳的人来说，的结果 本研究将有助于对接受血液透析的黑人ESRD患者的非正式ACP与家庭的新知识， 导致制定非正式非加太国家的文化敏感措施， 未来的干预措施，以增加非正式ACP的比例和内容与家庭。