Jumpstarting Culturally-informed Advance Care Planning with ANAI People in Primary Care

与 ANAI 初级护理人员一起启动基于文化的预先护理计划

• 批准号: 10504687
• 负责人: Jennifer Lyn Shaw
• 金额: $ 52.26万
• 依托单位: SOUTHCENTRAL FOUNDATION
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-08-22 至 2027-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10504687
• 关键词: Adult; Advance Care Planning; Advance Directives; Age; Alaska; Alaska Native; American; American Indians; Anxiety; Caring; Cessation of life; Chronic; Chronic Disease; Cirrhosis; Client satisfaction; Clinic; Cluster randomized trial; Communication; Communities; Consensus; Consolidated Framework for Implementation Research; Data; Diabetes Mellitus; Documentation; Effectiveness; Elderly; Electronic Health Record; Emotional; Ensure; Family; Family health status; Foundations; General Population; Goals; Grief reaction; Health; Health system; Healthcare Systems; Heart Diseases; Hypertension; Improve Access; Institute of Medicine (U.S.); Intervention; Kidney Diseases; Life; Measures; Medical; Mental Depression; Methods; Native-Born; Outcome; Palliative Care; Patient Care; Patient Preferences; Patient-Focused Outcomes; Patients; Persons; Pneumonia; Population; Population Heterogeneity; Primary Health Care; Provider; Race; Randomized Controlled Trials; Reporting; Research; Research Personnel; Respiratory Disease; Sampling; Specific qualifier value; Stroke; Support System; System; Taboo; Testing; Time; Training; United States; Work; care delivery; care providers; clinical practice; community engagement; cost; disability; effectiveness evaluation; effectiveness implementation study; effectiveness testing; end of life; end of life care; evidence base; follow-up; future implementation; high risk; implementation intervention; implementation science; implementation strategy; implementation study; improved; improved outcome; innovation; member; multidisciplinary; older patient; palliative; peer; primary outcome; process evaluation; programs; recruit; routine care; secondary outcome; surrogate decision maker; tool; treatment as usual; tribal health; tribal healthcare

PROJECT SUMMARY Chronic disease causes the most death and disability in the United States (US), and American Indian/Alaska Native people (ANAIs) are more likely than people of all other races to die of heart disease, diabetes, chronic lower respiratory disease, cirrhosis, stroke, pneumonia, kidney disease, and hypertension. Among ANAIs age 55 and older, 90% have at least one chronic condition, compared with 78% of their US peers. As the older ANAI population rapidly increases, with higher rates of serious illness than the general population, there is an urgent need for strategies to provide culturally tailored palliative and end-of-life care interventions for seriously ill ANAIs. However, ANAIs are far less likely than their US peers to use palliative care, including advance care planning (ACP), which involves discussing patient values and goals to align care with patient preferences. ACP leads to better outcomes for patients, their families, and health systems, including decreased depression, anxiety, and grief, fewer non-beneficial end-of-life treatments, and reduced cost. ACP is typically documented in advance directives (ADs) that specify patient preferences for life-sustaining treatments and who can make medical decisions on their behalf. Yet, less than a third of seriously ill US adults have ADs, and ANAIs age 55 and older are only half as likely to have ADs as their White peers. Previous research suggests that ANAIs will engage in ACP and complete ADs when given access to timely and culturally appropriate ACP conversations, but no ACP communication interventions have been rigorously tested with ANAIs. Our team used community engagement methods to culturally tailor an ACP communication intervention and pilot the tailored intervention—Jumpstart ANAI—with 68 seriously ill adult ANAIs at Southcentral Foundation (SCF), a Tribal health system in Alaska. We recruited 97% of the target sample (n=70) and retained >75% of patients at follow-up. We also found that 95% of patients stated that Jumpstart ANAI helped them to have ACP conversations with their primary care providers. This project expands upon a strong community-academic partnership to implement Jumpstart ANAI in the Tribal health system and evaluate it using an innovative type 1 hybrid effectiveness-implementation approach. Our specific aims are to: 1) Engage stakeholders to tailor an implementation plan for the Tribal health system that integrates Jumpstart ANAI into routine primary care practice; 2) Conduct a cluster-randomized trial with 40 primary care providers and 280 seriously ill ANAI patients to test the effectiveness of Jumpstart ANAI for increasing ACP as compared to usual care; and 3) Conduct a rigorous mixed-methods process evaluation using the Consolidated Framework for Implementation Research to assess barriers and facilitators to implementing Jumpstart ANAI system-wide. Improving access to and delivery of culturally appropriate evidence-based ACP is a high priority for Alaska’s Tribal health leaders and communities. By evaluating the effectiveness of a culturally tailored ACP intervention and tailoring implementation of the intervention into routine care, this study will provide critical evidence for improving palliative care and end-of-life care for seriously ill ANAI people and their families.

项目概要 在美国和美洲印第安人/阿拉斯加，慢性病导致最多的死亡和残疾 土著人 (ANAI) 比所有其他种族的人更有可能死于心脏病、糖尿病、慢性病 下呼吸道疾病、肝硬化、中风、肺炎、肾脏疾病和高血压。 55 岁及以上的老年人中，90% 至少患有一种慢性病，而美国同龄人的这一比例为 78%。 人口迅速增加，重病发生率高于总人口，亟待解决 需要制定策略，为重病 ANAI 提供适合文化的姑息治疗和临终关怀干预措施。 然而，ANAI 使用姑息治疗（包括预先护理计划）的可能性远低于美国同行 (ACP)，其中涉及讨论患者价值观和目标，使护理与患者偏好保持一致。 为患者、其家人和卫生系统带来更好的结果，包括减少抑郁、焦虑和 通常会提前记录悲伤、减少无益的临终治疗以及降低的 ACP 费用。 指令（AD），指定患者对维持生命治疗的偏好以及谁可以进行医疗 然而，只有不到三分之一的重病美国成年人患有 AD，并且 ANAI 年龄在 55 岁及以上。 先前的研究表明，ANAI 患有 AD 的可能性只有白人的一半。 当获得及时且文化上适当的 ACP 对话的权限时，ACP 和完整的 AD，但没有 ACP 我们的团队使用社区参与方式对沟通干预进行了严格测试。 在文化上定制 ACP 沟通干预并试点定制干预的方法 — Jumpstart ANAI——阿拉斯加部落卫生系统 Southcentral Foundation (SCF) 有 68 名患有严重疾病的成人 ANAI。 招募了 97% 的目标样本 (n=70)，并在随访时保留了 >75% 的患者。我们还发现，这一比例为 95%。 的患者表示，Jumpstart ANAI 帮助他们与初级保健提供者进行 ACP 对话。 该项目扩展了强大的社区学术伙伴关系，以在以下地区实施 Jumpstart ANAI 部落卫生系统并使用创新的 1 型混合有效性实施对其进行评估 我们的具体目标是： 1) 让利益相关者参与制定部落健康实施计划。 将 Jumpstart ANAI 纳入常规初级保健实践的系统 2) 进行整群随机试验； 与 40 名初级保健提供者和 280 名重病 ANAI 患者一起测试 Jumpstart ANAI 的有效性 与常规护理相比，增加 ACP；以及 3) 使用以下方法进行严格的混合方法过程评估： 实施研究综合框架，以评估实施的障碍和促进因素 在整个系统范围内快速启动 ANAI 是改善文化上适当的基于证据的 ACP 的获取和提供的途径。 通过评估文化的有效性，这是阿拉斯加部落健康领袖和社区的高度优先事项。 量身定制的 ACP 干预措施以及将干预措施实施到常规护理中的定制实施，本研究将提供 改善重病 ANAI 患者及其家人的姑息治疗和临终关怀的关键证据。