Racial Disparities in Distressing Symptoms for Nursing Home Residents at EOL with Alzheimer’s Disease and Related Dementias

患有阿尔茨海默病和相关痴呆症的疗养院居民在痛苦症状方面存在种族差异

• 批准号: 10387304
• 负责人: Cassandra Marie Dictus
• 金额: $ 3.79万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-01-07 至 2024-01-06
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10387304
• 关键词: Address; Affect; Age; Agitation; Alzheimer' s disease related dementia; Area; Big Data; Black race; COVID-19 pandemic; Caring; Cause of Death; Client; Clinical; Cognitive; Color; Complex; Confounding Factors (Epidemiology); Data; Data Set; Databases; Dementia; Discipline of Nursing; Disease; Distress; Eating; Edema; Family; Fellowship; Foundations; Friends; Future; Goals; Healthcare; Home Nursing Care; Impaired cognition; Impairment; Incontinence; Individual; Institutional Racism; Intervention; Interview; Link; Measures; Medicaid; Methods; National Institute of Nursing Research; Nurses; Nursing Homes; Outcome; Ownership; Pain; Pain management; Persons; Play; Population; Prevalence; Quality of Care; Race; Racial Equity; Research; Respiratory distress; Risk; Role; Scientist; Site; Specific qualifier value; Standardization; Structure; Symptoms; Time; Training; Work; base; career; comorbidity; decubitus ulcer; end of life; end of life care; experience; falls; health assessment; health care disparity; health difference; health equity; health inequalities; improved; lens; palliative; people of color; pre-doctoral; preference; psychological distress; racial disparity; racial diversity; racism; research study; segregation; sex; social health determinants; stakeholder perspectives; symptom management

PROJECT SUMMARY/ABSTRACT Alzheimer's disease and related dementias (ADRD) are increasing in prevalence and are among the most common causes of death and costliest diseases in the U.S. Approximately 60% of people with ADRD in the U.S. die in nursing homes (NHs). To maximize the quality of end of life (EOL), a palliative approach is needed that minimizes preventable or treatable distressing symptoms (e.g., pain, respiratory distress) and associated conditions (e.g., falls, pressure ulcers, aspiration) that cause physical and psychological distress. Factors, such as resident ADRD status (i.e., no, mild, moderate, or severe cognitive impairment), resident race, and NH-level racial segregation are associated with EOL care practices, but little is known about how these factors relate specifically to distressing EOL symptoms. Research is needed examining how racial disparities may intersect with residents' ADRD status to increase the risk of experiencing distressing symptoms. Current research lacks the perspectives of stakeholders, especially NH residents, family, and staff from racially segregated NHs who can speak to multi-level factors related to distressing symptoms. The proposed pre-doctoral training fellowship will include a mixed-methods study to examine differences related to ADRD status, race, and racial segregation and explore NH stakeholder views of distressing EOL symptoms. Aim 1 is to explore differences in distressing symptoms at EOL related to resident ADRD status, resident race, and NH racial segregation. Aim 1 will use U.S. MDS 3.0 data to examine the relationships of 19 distressing symptoms (e.g., pain, respiratory distress, falls) with resident ADRD status, race, and level of NH racial segregation, including confounding variables (e.g., resident age, sex, comorbidity burden and NH size, ownership, percent of residents using Medicaid). The primary hypothesis is that residents of color will experience worse symptom outcomes overall, but these differences will largely be explained by NH racial segregation. The secondary hypotheses are that there will be interaction effects for resident race*resident ADRD status and resident race*NH racial segregation. Aim 2 is to engage NH stakeholders to understand racial disparities in distressing symptoms for NH residents with ADRD at EOL. Through semi-structured interviews with stakeholders (e.g., residents, family, friends, care staff, managers) from racially segregated NHs, Aim 2 will explore stakeholder views of how distressing symptoms impact residents at EOL and factors associated with differences in distressing symptoms related to ADRD status, race, and racial segregation. Outcomes will inform future research by specifying stakeholders' perspectives about which symptoms are distressing for residents living in racially segregated NHs and potential causal factors of disparities at multiple levels. This fellowship will provide the trainee with a foundation in health equity, EOL care research, and use of the rich MDS dataset to launch a career as a nursing scientist. The findings will identify key areas for EOL care improvement and address barriers to health equity to reduce suffering among NH residents with ADRD at EOL.

项目总结/摘要 阿尔茨海默病和相关痴呆症（ADRD）的患病率正在增加，并且是最常见的痴呆症之一。 在美国，ADRD是常见的死亡原因和最昂贵的疾病。 美国在疗养院（Nursing Homes，NHS）为了最大限度地提高寿命终止（EOL）的质量，需要采取姑息性方法 使可预防或可治疗的痛苦症状最小化（例如，疼痛、呼吸窘迫）和 相关条件（例如，福尔斯、压力性溃疡、误吸），造成身体和心理上的痛苦。 因素，如居民ADRD状态（即，无，轻度、中度或重度认知障碍），居民 种族和NH级种族隔离与EOL护理实践相关，但很少有人知道如何 这些因素具体地与令人痛苦的EOL症状有关。需要进行研究， 差异可能与居民的ADRD状态交叉，以增加经历痛苦的风险 症状目前的研究缺乏利益相关者的观点，特别是NH居民，家庭和工作人员 从种族隔离的卫生保健人员，他们可以说与痛苦症状有关的多层次因素。的 拟议的博士前培训奖学金将包括一个混合方法的研究，以检查有关的差异， ADRD状态、种族和种族隔离，并探讨NH利益相关者对令人痛苦的EOL症状的看法。 目的1是探索与居民ADRD状态相关的EOL时痛苦症状的差异， 居民种族，和NH种族隔离。Aim 1将使用美国MDS 3.0数据来检查 19个令人痛苦的症状（例如，疼痛、呼吸窘迫、福尔斯）与居民ADRD状态、种族和 NH种族隔离，包括混杂变量（例如，居民年龄、性别、合并症负担和NH 规模、所有权、使用医疗补助的居民百分比）。主要假设是有色人种的居民 总体上经历了更差的症状结果，但这些差异在很大程度上是由NH种族 种族隔离次要假设是居民种族 * 居民之间存在交互作用。 ADRD状态和居民种族 *NH种族隔离。目标2是让NH利益相关者了解 种族差异的痛苦症状的NH居民与ADRD在EOL。通过半结构化 与利益相关者的访谈（例如，居民、家人、朋友、护理人员、管理人员） NHS，目标2将探讨利益相关者对EOL时痛苦症状如何影响居民的看法以及影响因素 与ADRD状态、种族和种族隔离相关的痛苦症状差异相关。 结果将通过指定利益相关者关于哪些症状是 令人痛心的居民生活在种族隔离的NHs和潜在的因果因素的差异，在多个 程度.该奖学金将为受训者提供健康公平，EOL护理研究和使用 丰富的MDS数据集，开始作为一个护理科学家的职业生涯。调查结果将确定EOL护理的关键领域 改善和解决健康公平的障碍，以减少在EOL的NH ADRD居民的痛苦。