End-of-Life in Assisted Living: Links between Structure, Process, and Outcomes

辅助生活的临终：结构、过程和结果之间的联系

• 批准号: 9265373
• 负责人: MOLLY M PERKINS
• 金额: $ 37.25万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-05-15 至 2020-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9265373
• 关键词: Address; Affect; Age; Assisted Living Facilities; Beds; Caregivers; Caring; Cessation of life; Chronic Disease; Community Healthcare; Comorbidity; Complex; Consensus; Data Analyses; Data Collection; Dementia; Elderly; Formal caregiver; Future; Goals; Guidelines; Home environment; Individual; Institute of Medicine (U.S.); Intervention; Interview; Knowledge; Licensing; Life; Life Experience; Link; Living Wills; Location; Long-Term Care; Low income; Mediation; Medicare; Methods; Outcome; Ownership; Palliative Care; Participant; Perception; Phase; Policy Maker; Population; Prevalence; Process; Provider; Qualitative Methods; Quality of Care; Quality of life; Regulation; Reporting; Research; Research Personnel; Resources; Rural; Services; Shapes; Site; Social Environment; Social Network; Societies; Structure; Terminally Ill; Time; Work; aging population; base; care systems; collaborative environment; dementia care; design; end of life; end of life care; ethnic minority population; experience; frailty; health care disparity; health record; hospice environment; improved; informal care; informal caregiver; insight; prospective; public health relevance; racial and ethnic; social; theories

DESCRIPTION (provided by applicant): Given the demographic imperative of a rapidly aging population, a major challenge of the 21st century will be the growing prevalence of older adults who die from old age, most within the context of advanced chronic illness. Increasing numbers of these older adults will receive care and die in assisted living (AL), currently the fastest growing long-term care (LTC) option. The proposed five-year prospective qualitative study will investigate end-of-life (EOL) care in AL from the perspective of multiple stakeholders (residents, AL staff, informal caregivers, and external care providers, e.g., hospice workers). We will use a multifaceted multilevel conceptual framework and draw upon salient aspects of social ecological theory, Donabedian's structure- process-outcome (SPO) quality-of-care paradigm, relational theory, as well as domains of quality adapted from The National Consensus Project (NCP) Guidelines for Quality Palliative Care. The overall goal of the proposed research is to address critical knowledge gaps and identify best practices for EOL care in AL. The three specific aims are: (1) understand how EOL is defined and experienced by AL residents and other key stakeholders; (2) investigate the structure and process of formal and informal care in AL and understand the interface between these care components and how they shape outcomes; and (3) identify the contexts and conditions within which structures and processes of care are shaped and understand the combined impact these aspects of care have on stakeholders' overall EOL experience. Increasingly, LTC scholars and policy-makers are calling for a broader definition of EOL that encompasses different EOL transitions, including dying as a phase of advanced chronic illness that may extend for years, as well as dying at the end of old age. In order to provide adequate support services and timely palliative care, it is important to acknowledge and identify these varying and often ambiguous EOL trajectories. Following the Institute of Medicine, we define the EOL experience broadly to include periods of decline associated with advanced age or chronic illness where the timing of death is uncertain. To investigate the EOL process as it unfolds over time, we will use grounded theory methods to study eight diverse AL settings in Georgia that vary according to size (6-15 beds; 16-24 beds; 25-50 beds; and 51+ beds), resident and staff profile, rural/urban location, ownership, licensing status, and resources. The study will include low-income, rural, and racial/ethnic minority residents, groups typically excluded from AL research, as well as residents living in dementia units. Data collection in each home will extend over two years and include: 271 in-depth interviews, informal interviewing, review of focal residents' social and health records, and participant observation. The proposed study will identify modifiable factors associated with adverse EOL experiences and potential disparities in care that can be targets of intervention at multiple ecological levels and contribute to ongoing efforts to transform and improve the quality of EOL care for older adults in LTC and other care settings.

描述（由申请人提供）：鉴于人口迅速老龄化的人口统计，21世纪的主要挑战将是大多数在高级慢性病背景下死于老年人的老年人的患病率越来越大。这些老年人的数量越来越多，将在辅助生活（AL）中获得护理和死亡，这是目前增长最快的长期护理（LTC）选择。拟议的五年预期定性研究将从多个利益相关者（居民，AL员工，非正式护理人员和外部护理提供者，例如临终关怀工作者）的角度从AL中调查临终关怀（EOL）护理。我们将使用多方面的多层次概念框架，并借鉴社会生态理论的显着方面，Donabedian的结构 - 过程结果（SPO）护理范围，关系理论以及根据国家共识项目（NCP）指南的质量palliatiative Palliative Palliative Pare Care的指南所改编的质量领域。拟议研究的总体目标是解决关键的知识差距，并确定AL中EOL护理的最佳实践。这三个具体目标是：（1）了解AL居民和其他主要利益相关者如何定义和经验EOL； （2）研究AL中正式和非正式护理的结构和过程，并了解这些护理组成部分之间的界面以及它们如何塑造结果； （3）确定塑造结构和护理过程的上下文和条件，并了解这些方面对利益相关者的整体EOL经验所产生的综合影响。 LTC学者和政策制定者越来越多地呼吁对EOL进行更广泛的定义，该定义包括不同的EOL过渡，包括死亡是可能延长多年的晚期慢性疾病阶段，并在老年末期死亡。为了提供足够的支持服务和及时的姑息治疗，重要的是要确认并确定这些不同且经常模棱两可的EOL轨迹。在医学研究所之后，我们将EOL经验广泛定义，包括与高龄或慢性病有关的衰落时期，而死亡时间不确定。为了调查EOL过程随着时间的推移而展开的，我们将使用基础理论方法研究乔治亚州的八种不同环境，这些设置会根据尺寸而变化（6-15张床； 16-24张床； 25-50张床；和51张床；和51张床；居民和员工概况，农村/城市/城市地点，所有权，许可状态以及资源。该研究将包括低收入，农村和种族/族裔少数民族居民，通常被排除在AL研究之外，以及居住在痴呆症单位的居民。每个房屋中的数据收集将延长两年，包括：271个深入的访谈，非正式访谈，重点居民的社会和健康记录的审查以及参与者的观察。拟议的研究将确定与不利的EOL经验和护理中潜在差异相关的可修改因素，这些因素可能是多个生态水平的干预目标，并有助于努力转变和改善LTC和其他护理环境中老年人的EOL护理质量。