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学必要性，21世纪的一个主要挑战将是老年人死于老年的患病率不断增加，大多数是在晚期慢性疾病的背景下。越来越多的老年人将接受护理并在辅助生活（AL）中死亡，这是目前增长最快的长期护理（LTC）选择。拟议的五年前瞻性定性研究将从多个利益相关者（居民、AL工作人员、非正式护理人员和外部护理提供者，例如，临终关怀工作者）。我们将使用一个多方面的多层次的概念框架，并借鉴社会生态理论的突出方面，多纳贝迪安的结构-过程-结果（SPO）的护理质量范式，关系理论，以及从全国共识项目（NCP）质量姑息治疗指南改编的质量领域。研究的总体目标是解决关键的知识差距，并确定最佳做法，为临终关怀在AL。具体的三个目标是：（1）了解如何界定临终关怀和经验的AL居民和其他关键利益相关者;（2）调查的结构和过程中，正式和非正式的照顾AL和了解这些照顾组件之间的接口和它们如何塑造的结果;以及（3）识别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的整体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，包括不同的EOL过渡，包括作为可能持续多年的晚期慢性疾病的一个阶段死亡，以及在老年结束时死亡。为了提供充分的支持服务和及时的姑息治疗，重要的是要认识到并确定这些变化的，往往是模糊的EOL轨迹。根据医学研究所的定义，我们将EOL经验广泛定义为包括与高龄或慢性疾病相关的衰退期，其中死亡时间不确定。为了研究EOL过程，因为它随着时间的推移展开，我们将使用扎根理论的方法来研究八个不同的AL设置在格鲁吉亚，根据大小（6-15张病床; 16-24张病床; 25-50张病床;和51+病床），居民和工作人员的个人资料，农村/城市的位置，所有权，许可状态和资源。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，以及居住在痴呆症单位的居民。每个家庭的数据收集将持续两年，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经验和护理中的潜在差异相关的可修改因素，这些因素可能是多个生态层面的干预目标，并有助于持续努力，以改变和提高LTC和其他护理环境中老年人的EOL护理质量。