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

描述(申请人提供)：鉴于人口迅速老龄化的人口需求，21世纪的主要挑战将是死于老年的老年人越来越普遍，其中大多数是在晚期慢性病的背景下死亡的。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。这项拟议的为期五年的前瞻性定性研究将从多个利益相关者(居民、AL工作人员、非正式照顾者和外部护理提供者，如临终关怀工作者)的角度调查AL的临终关怀。我们将使用一个多方面、多层次的概念框架，并借鉴社会生态理论、多纳贝迪安的结构-过程-结果(SPO)护理质量范例、关系理论以及从国家共识项目(NCP)质量缓和护理指南(NCP)改编的质量领域。拟议研究的总体目标是解决AL的关键知识差距，并确定AL的EOL护理的最佳实践。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体验EOL；(2)调查AL的正式和非正式护理的结构和过程，了解这些护理组成部分之间的接口及其如何影响结果；以及(3)确定形成护理结构和过程的背景和条件，并了解这些护理方面对利益相关者整体EOL体验的综合影响。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，包括不同的EOL过渡，包括作为可能持续多年的晚期慢性病的一个阶段死亡，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，重要的是承认和识别这些变化的和经常是模棱两可的EOL轨迹。在医学研究所之后，我们将EOL经验广义地定义为包括与死亡时间不确定的高龄或慢性病相关的衰退期。为了研究随着时间的推移而展开的EOL过程，我们将使用扎根的理论方法来研究佐治亚州的八个不同的AL环境，这些环境根据规模(6-15张床位；16-24张床位；25-50张床位；51张以上床位)、居民和工作人员概况、城乡位置、所有权、许可状态和资源而不同。这项研究将包括低收入、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。每家之家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的EOL经历和护理方面的潜在差异相关的可修改因素，这些因素可以成为多个生态层面的干预目标，并有助于正在进行的努力，以改变和提高LTC和其他护理环境中老年人的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.