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

I kua nau“让我实现您最后的愿望”夏威夷原住民长者的预先护理计划

• 批准号: 10768375
• 负责人: Marjorie K. Leimomi Mala Mau
• 金额: $ 79.33万
• 依托单位: TUFTS 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 2026-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10768375
• 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; Disparity; Documentation; Elderly; Electronic Health Record; Exhibits; Family; Family Caregiver; Focus Groups; Fostering; Friends; Funding; Future; Goals; Grant; Group Interviews; Hawaii; Hawaiian; Health; Health Insurance; Healthcare; Healthcare Systems; Hospice Care; Indigenous; Individual; Intervention; Intervention Studies; Interview; Knowledge; Life; Literature; Medical; Methods; Modeling; Morbidity - disease rate; Native Hawaiian; Native-Born; Oceans; Oral; Outcome; Palliative Care; Patient Preferences; Patients; Personal Communication; 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; Writing; care systems; collaborative approach; community engagement; design; disparity reduction; empowerment; 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; palliative; pilot test; preference; programs; randomized trial; recruit; response; social; therapy design; therapy development; tool; user-friendly; verbal

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）中正式化了 流程涉及口头或书面信息，旨在告知患者可能的医疗选择 姑息和临终关怀服务。大量研究表明，提高的ACP速率更好地对齐 医疗保健提供患者的喜好。尽管医疗保健系统中ACP服务扩大了，但 夏威夷原住民（NHS）始终具有可忽略不计的ACP和姑息和临终关怀的低使用率 服务。为了解决这些缺点，我们的多学科社区和研究小组已合作 为了创建i kua na'u“让我实现您的最后愿望” ACP视频干预。我们的社区 协作方法将创建，开发和测试I KUA NA'U综合视频ACP计划 纪念NHS的历史，观点和文化。确实，NH文化主要是口头传统 口语渗透到NHS的生活，是与邻居互动的正常方式，包括 最新的使用视频媒体适应。 I Kua Na'u计划将包括针对该的视频 NHS年龄较大的不同环境生活和获得医疗服务。视频将解释ACP的重要性， 通过允许录制个人视频，授权NHS讲述他们的故事（'Olelo Kama'ilio；“ Talk Story”） ACP愿望的声明，以及与家人，朋友和朋友分享个人视频声明的能力 临床医生。总体目标是进行五年计划，其中包括两年的发展 我Kua Na'u ACP视频程序进行了焦点小组测试，然后在NH中实施了三年 社区。在NHS中展示使用视频程序的有效性代表了 实践实施此工具。具体目的是：（1）进行NH的焦点小组和小组访谈 长者，他们的家人和他们的提供商，以告知NH ACP视频的创建和试点测试 在三种不同类型 为NH长老及其家人提供服务的组织（NH宅基地，集团辅助生活和卧床 关心）。 （2）比较220的ACP参与，知识，决策冲突和ACP完成率 NHS 55岁以上：（a）居住在宅基地或辅助生活的110人的前研究前研究设计 使用视频干预，以及（b）从门诊诊所招募的110人的随机试验。 （3）到 使用干预措施对165 NHS的个人视频声明进行定性评估。 （4）至 与居住的非NHS相比，比较ACP文档和临终关怀医疗保健利用 夏威夷在干预计划前后使用电子健康记录和/或保险数据。 传统的ACP计划不满足NHS的独特需求。创建和实施独特的 基于视频的NHS干预可以帮助支持该社区的决策并减少分布 在严重的疾病护理中。

项目成果

I kua na'u "Let me carry out your last wishes" Clinical trial protocol to promote advance care planning among native Hawaiian populations.

I kua nau “让我实现您最后的愿望”临床试验方案，以促进夏威夷原住民的预先护理计划。

• DOI: 10.1016/j.cct.2023.107365
• 发表时间: 2023
• 期刊: Contemporary clinical trials
• 影响因子: 2.2
• 作者: Quintiliani,LisaM;Kamaka,Martina;Henault,Lori;Antonio,MapuanaCK;Sentell,Tetine;Spencer,Kimberley;Akaka,Gerard;Honda,LianaKLaea;Hanakeawe,Damien;Dillard,Adrienne;Kekauoha,BPuni;Davis,ArethaDelight;Seitz,Rae;Cabral,HowardJ
• 通讯作者: Cabral,HowardJ