Culturally tailoring an advance care planning intervention for American Indians

我们研究计划的长期目标是，与美国印第安人和阿拉斯加原住民合作 社区，测试高级护理计划(ACP)的效力和有效性，旨在 文化--为他们的临终价值观和信仰量身定做。我们的项目建立在20年的合作基础上 首席调查员之一与参与部落--切诺基东部带之间的关系 印第安人，以及另一位首席调查员作为临终关怀和姑息治疗协会20年的临床经验 员工和丧亲协调员和她让你的愿望关于你(我的方式)干预设计和 研究经验。我们在这项申请中的目标是在文化上量身定做My Way ACP课程和 通过定性和定量的以社区为基础的参与式方法指导患者教育 让社区成员参与的方法，社区咨询委员会和专业咨询委员会。我们的 实施综合框架研究如何在不采取干预措施的情况下 为目标人群量身定做，通常都不太适合。我们这个项目的理由是它是成功的 完成工作将提供必要的增量步骤，为根据文化定制的我的 道路。我们的项目有三个具体目标：(1)在文化上量身定做My Way ACP课程的内容和 切诺基印第安人东部乐队的耐心教育指南；(2)评估文化上的可行性- 与切诺基印第安人东部乐队一起量身定做我的ACP课程和耐心教育指南；以及 (3)检查文化定制的My Way ACP课程和患者教育指南的初步结果 有70名切诺基印第安人东部乐队成员。在这个项目成功完成后，我们预计将 我开发了一种可行的文化定制方式，通过准试验性的等待名单设计展示了 承诺作为一个有效的计划，在自我效能、准备就绪和完成ACP方面提高 促进并减少了对非加太计划的障碍。我们将处于有利地位，能够获得R01资金，以支持 文化上量身定制的随机对照试验，以评估其疗效。重要的是，我们希望 第一批为美国印第安人创建了ACP计划的人之一，该计划将导致与其他 美国印第安人以及阿拉斯加社区，以确保所有人都有机会表达和 记录他们的护理意愿。我们的结果可望对临床和治疗产生长期积极影响 切诺基印第安人东带和其他土著社区的公共卫生实践 实施适应文化多样性的My Way ACP课程和患者指南 在整个印度国家，关于生命终结和死亡的价值观以及信仰和习俗。

The long-term goal of our research program is to, in collaboration with American Indian and Alaska Native communities, test the efficacy and effectiveness of an advance care planning (ACP) program designed to be culturally-tailored to their end-of-life values and beliefs. Our project builds upon a 20-year collaborative relationship between one of the Principal Investigators and the participating tribe, the Eastern Band of Cherokee Indians, and the other Principal Investigator's 20-year clinical experience as a hospice and palliative care social worker and bereavement coordinator and her Make Your Wishes About You (MY WAY) intervention design and research experience. Our objective in this application is to culturally tailor the MY WAY ACP curriculum and patient education guide using a community-based participatory approach through qualitative and quantitative methods engaging community members, a Community Advisory Board, and a Professional Advisory Board. Our approach is informed by the Consolidated Framework for Implementation Research of how interventions, without tailoring for the target population, are usually a poor fit. Our rationale for this project is that its successful completion will provide the necessary incremental step in developing the evidence for the culturally-tailored MY WAY. Our project has three specific aims: (1) culturally tailor the content of the MY WAY ACP curriculum and patient education guide for the Eastern Band of Cherokee Indians; (2) assess the feasibility of the culturally- tailored MY WAY ACP curriculum and patient education guide with the Eastern Band of Cherokee Indians; and (3) examine preliminary outcomes of the culturally-tailored MY WAY ACP curriculum and patient education guide with 70 Eastern Band of Cherokee Indian members. At the successful completion of this project, we expect to have developed a feasible culturally-tailored MY WAY that through a quasi-experimental waitlist design shows promise as an efficacious program with respect to self-efficacy, readiness, and ACP completion that increases facilitators and decreases barriers to ACP. We will be well-positioned to pursue R01 funding to support a randomized controlled trail of the culturally-tailored MY WAY to assess its efficacy. Importantly, we expect to be among the first to have created an ACP program for American Indians that will lead to dissemination with other American Indian as well as Alaska communities to ensure that all are given the opportunity to express and document their care wishes. Our results can be expected to have a long term positive impact for clinical and public health practice at the Eastern Band of Cherokee Indians and other Native communities through the implementation of the MY WAY ACP curriculum and patient guide that is responsive to the diversity of cultural values as well as beliefs and practices with respect to end-of-life and death across Indian Country.