Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia

患有痴呆症的辅助生活居民的有意义的参与和生活质量

基本信息

批准号：
10594292
负责人：
Candace Lynn Kemp
金额：
$ 12.88万
依托单位：
GEORGIA STATE UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2018
资助国家：
美国
起止时间：
2018-09-30 至 2024-05-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10594292
关键词：
Accounting Address Age Area Assisted Living Facilities Bioethics COVID-19 COVID-19 pandemic Caring Clinical Ethics Code Cognitive Complex Conflict (Psychology)Data Data Collection Decision Making Dementia Development Distress Educational Materials Elderly Equilibrium Ethical Issues Ethicists Ethics Family Frequencies Friends Goals Home Impaired cognition Incidence Individual Knowledge Learning Life Location Long-Term Care Modeling Morals Morbidity - disease rate Nature Pattern Personal Satisfaction Persons Policies Policy Developments Public Health Quality of Care Quality of life Recommendation Research Research Personnel Resolution Resource Development Resources Risk Safety Security Shapes Signal Transduction Stress Time Training Typology Uncertainty United States Department of Veterans Affairs Work base caregiving community living design education resources evidence base experience improved lens pandemic disease parent project preference programs residential care facility routine care social stigma sound

项目摘要

PROJECT SUMMARY/ABSTRACT Assisted living (AL), one of the fastest growing residential long-term care options in the US, is home to nearly one million older adults, many of whom are advanced in age, physically and cognitively vulnerable, and have multiple morbidities, including dementia. On a daily basis, residents and those who care for them, including staff, residents’ family and friends, and external workers encounter uncertainty and conflict about values as do researchers in these settings. Prior to the pandemic, which is exacerbating uncertainty, AL communities were rife with ethical issues with implications for resident quality of life and care and care partners well-being. Yet, with few exceptions, mainly our recent work, research has overlooked ethical issues in AL and critical knowledge gaps remain. Our research suggests that “identifying ethical issues and the underlying principles” is key to promoting “ethically sound practices.” An in-depth understanding of ethics in AL is needed for effective policy and resource development. In this project, we build on existing work, including a typology we developed using pre-pandemic data. Our aims are: 1) To apply the typology of “Ethical Issues in Assisted Living” to data collected during the pandemic to further characterize the nature, types, and frequency of previously-identified types of ethical issues, and to identify newly emerging issues, especially those relating to the COVID-19 pandemic; and 2) To develop educational materials and training for researchers in order to build capacity for the identification and understanding of ethical issues working in assisted living and with persons living with dementia and their care partners. We address our aims using data from the parent project, “Meaningful Engagement and Quality of Life among AL Residents with Dementia.” This five-year study seeks to learn from residents and their care partners and involves studying daily life and care routines. Supplement findings will elucidate the ethical context in this complex care setting and provide a base of evidence to inform policy and practice recommendations aimed at improving assisted living resident quality of life and quality of care and reducing moral stress and distress among care partners. Findings also will build capacity and guidance for researchers in the AL space with implications more broadly for research in long-term care and caregiving studies, as well as research involving persons living with dementia. Accomplishing our aims will ultimately enhance the overall impact of the parent project and advance bioethics research.

项目概要/摘要辅助生活 (AL) 是美国增长最快的住宅长期护理选择之一，拥有近 100 万老年人，其中许多人年事已高，身体和认知能力脆弱，并且居民和照顾他们的人每天都会罹患多种疾病，包括痴呆症。员工、住户家人和朋友以及外部工作人员都会遇到价值观的不确定性和冲突在这场加剧不确定性的大流行之前，AL 社区的研究人员生活中存在道德问题，对居民的生活质量以及护理和护理伙伴的福祉产生影响。除了少数例外，主要是我们最近的工作，研究忽视了 AL 中的道德问题和关键问题我们的研究表明，“确定道德问题和基本原则”仍然存在。促进“符合道德规范的实践”的关键。要有效地实施 AL，需要深入了解道德规范。在这个项目中，我们以现有工作为基础，包括我们开发的类型。使用大流行前的数据。我们的目标是：1）将“辅助生活中的道德问题”的类型应用于数据。在大流行期间收集，以进一步描述先前识别的性质、类型和频率类型的道德问题，并识别新出现的问题，特别是与 COVID-19 相关的问题 2) 为研究人员开发教育材料和培训，以培养应对疫情的能力识别和理解辅助生活中以及与患有艾滋病的人一起工作的道德问题我们使用父项目“有意义”的数据来实现我们的目标。这项为期五年的研究旨在学习阿拉巴马州痴呆症患者的参与度和生活质量。” 居民及其护理伙伴，并涉及研究日常生活和护理常规。阐明这种复杂护理环境中的伦理背景，并提供证据基础来指导政策和旨在提高辅助生活居民的生活质量和护理质量的实践建议减少护理伙伴之间的道德压力和困扰。研究结果还将为以下方面提供能力建设和指导。 AL 领域的研究人员对长期护理和护理研究具有更广泛的影响研究以及涉及痴呆症患者的研究最终将实现我们的目标。增强母项目的整体影响并推进生物伦理学研究。

项目成果

期刊论文数量（6）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Meaningful Engagement Among Assisted Living Residents With Dementia: Successful Approaches.

患有痴呆症的辅助生活居民的有意义的参与：成功的方法。

DOI：
发表时间：
2021
期刊：
影响因子：
0
作者：
Kemp, Candace L;Bender, Alexis A;Ciofi, Joy;Craft Morgan, Jennifer;Burgess, Elisabeth O;Duong, Stephen;Epps, Fayron R;Hill, Andrea Michelle;Manley, Pamela R;Sease, Jasmine;Perkins, Molly M
通讯作者：
Perkins, Molly M

The Ethics in Long-Term Care Model: Everyday Ethics and the Unseen Moral Landscape of Assisted Living.

长期护理模式中的道德规范：日常道德规范和辅助生活中看不见的道德景观。