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

描述（由申请人提供）：考虑到人口快速老龄化的必要性，21世纪的一个主要挑战将是老年人老年死亡的日益普遍，其中大多数是晚期慢性疾病。越来越多的老年人将接受护理并死于辅助生活（AL），这是目前增长最快的长期护理（LTC）选择。这项为期五年的前瞻性质性研究将从多个利益相关者（住客、临终关怀人员、非正式照护者和外部照护提供者，例如安宁疗护工作者）的角度调查临终关怀（EOL）。我们将使用多方面的多层次概念框架，并借鉴社会生态学理论的突出方面，Donabedian的结构-过程-结果（SPO）护理质量范式，关系理论，以及改编自国家共识项目（NCP）质量姑息治疗指南的质量领域。本研究的总体目标是解决关键的知识缺口，并确定AL中EOL护理的最佳实践。三个具体目标是：(1)了解AL居民和其他关键利益相关者如何定义和体验EOL；(2)研究人工智能中正式和非正式护理的结构和过程，了解这些护理成分之间的接口及其如何影响结果；(3)确定护理结构和过程形成的背景和条件，并了解护理的这些方面对利益相关者整体EOL体验的综合影响。越来越多的LTC学者和政策制定者呼吁对EOL进行更广泛的定义，以涵盖不同的EOL转变，包括作为可能持续多年的晚期慢性疾病阶段死亡，以及在老年结束时死亡。为了提供足够的支持服务和及时的姑息治疗，重要的是要承认和识别这些不同的，往往是模糊的EOL轨迹。根据医学研究所，我们将EOL经历广义地定义为包括与高龄或慢性疾病相关的衰退时期，其中死亡时间是不确定的。为了调查随着时间的推移而展开的EOL过程，我们将使用基于理论的方法来研究佐治亚州的八个不同的AL设置，这些设置根据规模（6-15张床位；16-24张床位；25-50张床位；51张以上床位）、居民和员工概况、农村/城市位置、所有权、许可状态和资源而有所不同。该研究将包括低收入，农村和种族/少数民族居民，通常被排除在AL研究之外的群体，以及居住在痴呆症病房的居民。每个家庭的数据收集将持续两年以上，包括：271次深入访谈、非正式访谈、审查重点居民的社会和健康记录以及参与者观察。拟议的研究将确定与不良EOL经历和护理中潜在差异相关的可改变因素，这些因素可以成为多个生态水平干预的目标，并有助于持续努力改变和提高LTC和其他护理机构中老年人EOL护理的质量。

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.