I kua na'u "Let Me Carry Out Your Last Wishes" Advance Care Planning for Native Hawaiian Elders

I kua nau“让我实现您最后的愿望”夏威夷原住民长者预先护理计划

• 批准号: 10379275
• 负责人: Marjorie K. Leimomi Mala Mau
• 金额: $ 67.92万
• 依托单位: BOSTON MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-05-20 至 2022-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10379275
• 关键词: Address; Advance Care Planning; Advance Directives; Age; Ambulatory Care; Animals; Assisted Living Facilities; Boston; Caregivers; Caring; Clinic; Collaborations; Communication; Communities; Conflict (Psychology); Counseling; Data; Decision Making; Development; Documentation; Elderly; Electronic Health Record; Exhibits; Family; Family Caregiver; Focus Groups; Fostering; Friends; Funding; Future; Goals; Grant; Group Interviews; Hawaiian; Health; Health Insurance; Healthcare; Healthcare Systems; Hospice Care; Indigenous; Individual; Insurance; Intervention; Intervention Studies; Knowledge; Life; Literature; Medical; Methods; Modeling; Morbidity - disease rate; Native Hawaiian; Native-Born; Oceans; Oral; Outcome; Palliative Care; Patient Preferences; Patients; Persons; Plants; Population; Process; Provider; Quality of Care; Randomized; Randomized Controlled Trials; Recording of previous events; Research; Research Design; Services; Surveys; Testing; Time; Training Programs; Translating; United States National Institutes of Health; Use Effectiveness; Work; base; care systems; collaborative approach; community based participatory research; design; end of life; end of life care; evidence base; falls; health care delivery; health care disparity; health care service utilization; hospice environment; improved; innovation; intervention program; meetings; member; mortality; multidisciplinary; non-Native; palliative; pilot test; preference; programs; randomized trial; recruit; response; social; therapy design; therapy development; tool; user-friendly

Communication surrounding serious illness decision making is formalized in Advance Care Planning (ACP), a process involving verbal or written information designed to inform patients of possible medical options including palliative and hospice care services. Numerous studies have suggested that improved ACP rates better align health care delivery with patient preferences. Despite expansion of ACP services in the health care system, Native Hawaiians (NHs) consistently have negligible rates of ACP and low use of palliative and hospice care services. To address these shortcomings, our multi-disciplinary community and research group has partnered to create the I kua na'u "Let Me Carry Out Your Last Wishes" ACP video intervention. Our Community-Based Collaborative Approach will create, develop and test the I kua na'u comprehensive video-based ACP program honoring the history, opinions, and culture of NHs. Indeed, NH culture is primarily an oral tradition in which the spoken word permeates the life of NHs and is the normal way of interacting with neighbors, including in its most recent adaptation with the use of video media. The I kua na'u program will include videos tailored for the different settings in which older NHs live and get medical care. The videos will explain the importance of ACP, empower NHs to tell their story ('olelo Kama'ilio; "Talk Story") by allowing the recording of personal video declarations of ACP wishes, and the ability to share the personal video declaration with family, friends and clinicians. The overall objective is to conduct a five-year program that includes two years of development of the I kua na'u ACP video program with focus group testing, and then three years of implementation in the NH community. Demonstrating the effectiveness of using the video program in NHs represents an essential step to implement this tool in practice. The Specific Aims are: (1) To conduct focus groups and group interviews of NH elders, their families, and their providers to inform the creation and pilot-testing of NH ACP videos that would embrace the NH concept of I kua naʻu - "Let me help carry out your last wishes" among three different types of organizations serving NH elders and their families (NH Homestead, Group Assisted Living, and Ambulatory Care). (2) To compare the ACP engagement, knowledge, decisional conflict, and ACP completion rates in 220 NHs over the age of 55 in: (a) a pre-post study design in 110 people living on Homestead or Assisted Living using the video intervention, and (b) a randomized trial of 110 people recruited from Ambulatory Clinics. (3) To conduct a qualitative assessment of personal video declarations from 165 NHs using the intervention. (4) To compare ACP documentation and end-of-life health care utilization of NHs compared to non-NHs living in Hawaiʻi before and after the intervention program using electronic health records and/or insurance data. Conventional ACP programs do not meet the unique needs of NHs. Creating and implementing a unique video-based intervention for NHs can help support decision making in this community and decrease disparities in serious illness care.

围绕严重疾病决策的沟通在预先护理计划 (ACP) 中得到正式化，这是一个 涉及口头或书面信息的过程，旨在告知患者可能的医疗选择，包括 大量研究表明，姑息治疗和临终关怀服务的改善与 ACP 率更好地保持一致。 尽管医疗保健系统中的 ACP 服务有所扩展， 夏威夷原住民 (NH) 的 ACP 发生率始终可以忽略不计，姑息治疗和临终关怀的使用率也很低 为了解决这些缺点，我们的多学科社区和研究小组进行了合作。 创建 I kua na'u“让我实现您最后的愿望”ACP 视频干预。 Collaborative Approach 将创建、开发和测试 I kua na'u 基于视频的综合 ACP 程序 尊重 NH 的历史、观点和文化 事实上，NH 文化主要是一种口头传统，其中 口头语言渗透到NHs的生活中，是与邻居互动的正常方式，包括在其生活中 最近使用视频媒体进行的改编将包括为该项目量身定制的视频。 老年 NH 生活和获得医疗护理的不同环境这些视频将解释 ACP 的重要性， 通过允许录制个人视频，授权 NH 讲述他们的故事（'olelo Kama'ilio；“Talk Story”） ACP 愿望宣言，以及与家人、朋友和家人分享个人视频宣言的能力 总体目标是实施一个五年计划，其中包括两年的开发 我通过焦点小组测试进行了 ACP 视频计划，然后在新罕布什尔州实施了三年 展示在 NH 中使用视频程序的有效性是实现这一目标的重要一步。 在实践中实施该工具的具体目标是： (1) 对 NH 进行焦点小组和小组访谈。 长者、他们的家人和他们的提供者为 NH ACP 视频的制作和试点测试提供信息，这些视频将 拥抱 NH 的 I kua na`u 概念 - “让我帮助实现您最后的愿望”在三种不同类型的 为 NH 长者及其家人提供服务的组织（NH Homestead、Group Assisted Living 和 Ambulatory (2) 比较 220 年的 ACP 参与度、知识、决策冲突和 ACP 完成率 55 岁以上的 NH 参与：(a) 针对 110 名居住在宅基地或辅助生活的人的事前研究设计 使用视频干预，以及 (b) 对流动诊所招募的 110 人进行随机试验 (3)。 (4) 使用干预措施对 165 个 NH 的个人视频声明进行定性评估。 比较 NH 的 ACP 文件和临终医疗保健利用率与居住在以下国家的非 NH 的情况 夏威夷在干预计划之前和之后使用电子健康记录和/或保险数据。 传统的 ACP 计划无法满足 NH 的独特需求。 创建和实施独特的计划。 针对 NH 的基于视频的干预可以帮助支持该社区的决策并减少差异 在重病护理中。