Culturally tailoring an advance care planning intervention for American Indians

为美洲印第安人量身定制预先护理计划干预措施

基本信息

批准号：
10369055
负责人：
ELIZABETH H ANDERSON
金额：
$ 18.17万
依托单位：
WESTERN CAROLINA UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2021
资助国家：
美国
起止时间：
2021-03-09 至 2024-02-29
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10369055
关键词：
Address Advance Care Planning Alaska Alaska Native American Indians Anxiety Attention Belief Bereavement Blackfeet Breathing COVID-19 Caring Cessation of life Cherokee Indian Chippewa Chronic Disease Chronic Kidney Failure Clinical Code Collaborations Communication Communities Comprehension Consolidated Framework for Implementation Research Country Cultural Diversity Distress Do Not Resuscitate Order Educational Curriculum Effectiveness Elderly Elements Ensure Event Family Family Caregiver Family member Funding Futile Treatments Goals Health Health Personnel Healthcare Home Hospice Care Image Individual Intervention Intervention Studies Methods Non-Insulin-Dependent Diabetes Mellitus Outcome Palliative Care Participant Patient Care Planning Patient Education Patients Persons Plague Population Positioning Attribute Principal Investigator Process Public Health Practice Publishing Quality of life Randomized Randomized Controlled Trials Readiness Recommendation Reporting Research Research Training Ritual compulsion Role Sampling Self Efficacy Social Workers Target Populations Techniques Testing Thinking Time Tribes Value of Life Visual Waiting Lists Work aged base burden of illness chronic liver disease clinically relevant community engagement cultural values design disease disparity efficacy study efficacy testing end of life end of life care end-of-life decision making experience hospice environment improved member multidisciplinary preference prevent primary caregiver programs recruit satisfaction social therapy design trial design tribal community tribal member

项目摘要

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.

我们研究计划的长期目标是与美洲印第安人和阿拉斯加原住民合作社区，测试预先护理计划 (ACP) 计划的有效性和有效性，该计划旨在根据他们的临终价值观和信仰进行文化定制。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罗基东部部落之间的关系 Indians 和另一位首席研究员作为临终关怀和姑息治疗社会的 20 年临床经验工人和丧亲协调员以及她的“Make Your Wishes About You”（我的方式）干预设计和研究经验。我们在此应用程序中的目标是根据文化定制 MY WAY ACP 课程并通过定性和定量，使用基于社区的参与方法进行患者教育指南吸引社区成员、社区咨询委员会和专业咨询委员会参与的方法。我们的实施研究综合框架为该方法提供了如何干预的信息，而无需为目标人群量身定制的产品通常不太合适。我们开展这个项目的理由是它的成功完成将为开发针对文化的 MY 的证据提供必要的渐进步骤方式。我们的项目有三个具体目标：(1) 在文化上定制 MY WAY ACP 课程的内容，以及切罗基印第安人东部族群患者教育指南； (2) 评估文化上的可行性与东部切罗基族印第安人一起定制 MY WAY ACP 课程和患者教育指南；和 (3) 检查根据文化量身定制的 MY WAY ACP 课程和患者教育指南的初步成果拥有 70 名东部切罗基印第安人乐队成员。在该项目顺利完成后，我们期望开发了一种可行的文化定制的“我的方式”，通过准实验性的候补名单设计展示承诺作为一项有效的计划，在自我效能、准备情况和 ACP 完成方面提高 ACP 的促进者并减少障碍。我们将有能力寻求 R01 资金来支持对文化定制的“我的方式”进行随机对照试验，以评估其功效。重要的是，我们期望是最早为美洲印第安人创建 ACP 计划的人之一，该计划将导致与其他人的传播美洲印第安人和阿拉斯加社区确保所有人都有机会表达和表达记录他们的护理意愿。我们的结果预计会对临床和临床产生长期的积极影响切罗基印第安人东部部落和其他原住民社区的公共卫生实践实施响应文化多样性的 MY WAY ACP 课程和患者指南印度各地关于临终和死亡的价值观、信仰和做法。