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

基本信息

批准号：
10455015
负责人：
Marlena Camille Fisher
金额：
$ 4.46万
依托单位：
JOHNS HOPKINS UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2020
资助国家：
美国
起止时间：
2020-09-01 至 2023-07-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10455015
关键词：
Adoption Advance Care Planning Advance Directives Affect Anxiety Baltimore Bereavement Black Populations Black race 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 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

项目摘要

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3000万受影响的人，超过一半的人需要血液透析治疗，以取代肾脏系统。血液透析开始后一年和三年的死亡率为16％和43％，分别。此外，黑人被诊断出患有末期肾脏疾病的可能性高2.9倍（ESRD）与白人相比。由于这种种族差异和ESRD中的相关死亡率，预先护理计划（ACP）对于该人群而言至关重要，因为它与高质量护理的关联生命的尽头。正式ACP被定义为书面提前指令，该指令说明护理的偏好或在终止终止和/或指定替代决策者的书面文件附近的处理应一个人变得无能为力，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，黑人在很大程度上不足 ACP研究。如果了解与黑人非正式ACP相关的因素有更多的了解，请进行干预可以开发以提高黑人黑人非正式ACP的内容和速率血液透析。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，顺序解释性混合方法研究设计将用于检查和探索个人，人际和结构因素与家庭参与之间的关系黑人的非正式ACP在血液透析上具有ESRD。提出了以下特定目标 1：检查个人因素之间的关系（疾病感知，对末期肾脏的期望疾病和血液透析治疗），人际关系因素（宗教信仰，灵性和社会支持）和结构性因素（健康素养和对医疗保健的信任）以及ESRD的黑人是否在血液透析上让家人参与非正式的ACP。目标2：探索与黑人的非正式ACP的背景 ESRD在血液透析上。目标3：全面描述目标1和2中识别的因素如何影响非正式的ACP在黑人中与血液透析有关的黑人。拟议的研究与国家护理研究所的战略计划，了解医疗保健决策在整个寿命中，患有晚期疾病的人以及患有健康差异的人。结果这项研究将为非正式ACP提供新知识，与黑人的家庭有关，ESRD在血液透析上，导致对非正式ACP的文化敏感措施的发展以及未来的干预措施，以提高非正式ACP与家人的速度和内容。

项目成果

期刊论文数量（4）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

"They Would Lift My Spirits": Sources of Support for Family Surrogate Decision-Makers at the End of Life.

“他们会振奋我的精神”：临终时家庭代理决策者的支持来源。

DOI：
10.1097/njh.0000000000000939
发表时间：
2023
期刊：
Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association
影响因子：
0
作者：
Fisher,MarlenaC;Parrillo,Elaina;Petchler,Claire;Kub,Joan;Hughes,MarkT;Sulmasy,DanielP;Baker,Deborah;Nolan,MarieT
通讯作者：
Nolan,MarieT

Strategies for success in a nursing PhD program and beyond.

DOI：
10.1016/j.profnurs.2022.01.004
发表时间：
2022-03
期刊：
Journal of professional nursing : official journal of the American Association of Colleges of Nursing
影响因子：
0
作者：
Fisher MC;Gray TF;Uveges MK;Heinze KE;Pellathy TP;Parrillo E;Hravnak M;Nolan MT
通讯作者：
Nolan MT

Racism and Older Black Americans' Health: a Systematic Review.