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.

项目概要 慢性肾病影响着美国 15% 的人口，导致超过 3000 万人罹患慢性肾病 受影响的人，其中一半以上需要血液透析治疗以替代其功能 肾脏系统。开始血液透析后一年和三年的死亡率分别为 16% 和 43%， 分别。此外，黑人被诊断出患有终末期肾病的可能性是黑人的 2.9 倍 (ESRD) 与白人相比。由于终末期肾病 (ESRD) 的这种种族差异和相关死亡率，需要提前护理 规划（ACP）对于这一人群极其重要，因为它与高质量护理相关。 生命的终结。正式 ACP 被定义为书面预先指示，说明护理或护理偏好 临终时的治疗和/或指定代理决策者的书面文件应 失去行为能力的人称为医疗保健授权书。 ACP 的患病率主要是 通过书面预先指示进行评估，并且黑人更有可能与家人一起参与非正式的 ACP， 是没有相关书面文件的讨论。因此，黑人的代表性在很大程度上不足 ACP 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 可以开发以提高患有 ESRD 的黑人的非正式 ACP 的内容和比率 血液透析。以一个概念框架为指导，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查和探索 个人、人际和结构因素与家庭参与之间的关系 患有血液透析终末期肾病 (ESRD) 的黑人的非正式 ACP。提出以下具体目标 目标 1：考察个人因素（疾病认知、终末期肾病期望）之间的关系 疾病和血液透析治疗）、人际因素（宗教信仰、灵性和社会支持），以及 结构性因素（健康素养和对医疗保健的信任）以及患有 ESRD 的黑人是否接受血液透析 让家人参与非正式的 ACP。目标 2：探讨黑人中非正式 ACP 与家庭的背景 血液透析中的 ESRD。目标 3：全面描述目标 1 和 2 中确定的因素如何影响 患有终末期肾病 (ESRD) 并接受血液透析的黑人与家人进行非正式 ACP。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 患有晚期疾病和健康状况差异的人的整个生命周期。结果 这项研究将为患有 ESRD 的黑人家庭提供关于血液透析的非正式 ACP 的新知识， 导致非正式 ACP 文化敏感措施的发展以及 未来的干预措施，以提高与家庭进行非正式 ACP 的比率和内容。