Exploring Palliative Care Communication with Alaska Native and American Indian People at Two Primary Care Sites

项目摘要 姑息治疗是一个跨学科领域，旨在缓解情感、精神和身体上的痛苦，并 改善严重、限制生命的疾病患者及其家人的生活质量。不幸的是，只是治标不治本 护理往往在护理过程中引入得太晚，无法最大限度地发挥其潜在好处，部分原因是 医疗保健提供者缺乏与患者就提前护理计划(ACP)展开对话的技能。ACP 是姑息治疗的重要组成部分，患者、家属和提供者讨论并计划 期望的治疗目标，包括患者对护理的偏好以及谁可以代表他们做出决定。 在严重的、限制生命的疾病进展之前，及早将ACP纳入治疗，可以改善患者和 照顾者的生活质量、成本和生存。初级保健是早期整合ACP的理想环境，因为 初级保健提供者经常诊断和护理患有严重、限制生命的疾病的患者。 阿拉斯加土著和美国印第安人(AN/AI)有不成比例的高患病率，许多 严重的、限制生命的疾病，如癌症、冠心病和肝病。然而，AN/AIS使用ACP 和其他姑息治疗服务明显少于总人口。造成这种差距的原因 目前尚不清楚，在姑息治疗研究中，AN/AI是代表性最低的群体之一。上一首 研究显示，如果有机会，认可机构会参与机场核心计划，而我们亦获得一致支持。 在初级保健环境中制定文化一致的非典干预措施的ANS中。需要及时地 在AN/AI社区中，有效的ACP正在增长，迫切需要文化上的一致， 以患者为中心的姑息治疗干预AN/AI，因为部落卫生系统管理着越来越多的 患有严重的、限制生命的疾病的AN/AI个人。 我们建议进行一项协作性的临床研究：1)与40个关键利益相关者(患者、 护理人员、提供者、管理人员)在两个部落卫生系统中，以定制现有的ACP通信 对患有严重、限制生命的疾病的AN/AIS的干预；2)评估 采用认知访谈对20例AN/AI患者进行量身定制的ACP沟通干预；3)比较 量身定做的干预措施对非加太项目讨论频率以及质量和满意度的影响 与30名AN/AI患者之间的ACP通信，接收个性化信息以提示ACP 与提供者和30名接受常规护理的AN/AI患者进行讨论，并提供信息以促进讨论。 实施有效、适当的ACP是南中央基金会(SCF)和第一个 国家社区卫生资源(FNCH)，两个部落卫生系统，为AN/AIS的大量人口提供服务 严重的、限制生命的疾病。这项拟议的研究将开发和评估一位文化契合的患者- 以ACP干预为中心的这些站点，将为大型、多站点临床试验奠定基础 干预措施可以改善500万AN/AI美国人的患者和照顾者结果。

Project Summary Palliative care is an interdisciplinary field that aims to relieve emotional, spiritual and physical suffering and improve quality of life in patients with serious, life-limiting illness and their families. Unfortunately, palliative care is often introduced too late in the course of care to maximize its potential benefits, in part because healthcare providers lack skills to initiate conversations with patients about advance care planning (ACP). ACP is an important component of palliative care in which patients, families and providers discuss and plan for desired treatment goals, including patients' preferences for care and who can make decisions on their behalf. Integrating ACP into treatment early, before serious, life-limiting illness advances, can improve patient and caregiver quality of life, cost, and survival. Primary care is an ideal setting for early integration of ACP, as primary care providers routinely diagnose and care for patients with serious, life-limiting illnesses. Alaska Native and American Indian (AN/AI) people have disproportionately high prevalence of many serious, life-limiting illnesses such as cancer, coronary heart disease, and liver disease. Yet, AN/AIs use ACP and other palliative care services significantly less than the overall population. The reasons for this disparity are unclear, and AN/AIs are among the most underrepresented groups in palliative care studies. Previous research indicates that when given the opportunity, AIs will engage in ACP, and we found unanimous support among ANs for developing culturally congruent ACP interventions in primary care settings. The need for timely and effective ACP is growing in AN/AI communities and there is a pressing need for culturally-congruent, patient-centered palliative care interventions for AN/AIs as tribal health systems manage rising numbers of AN/AI individuals with serious, life-limiting illnesses. We propose a collaborative, clinical study to: 1) conduct focus groups with 40 key stakeholders (patients, caregivers, providers, administrators) in two tribal health systems to tailor an existing ACP communication intervention for AN/AIs with serious, life-limiting illness; 2) evaluate the cultural relevance and usability of the tailored ACP communication intervention among 20 AN/AI patients using cognitive interviews; and 3) compare the impact of the tailored intervention on frequency of ACP discussions, as well as quality of and satisfaction with ACP communication between 30 AN/AI patients receiving individualized information to prompt ACP discussions with providers and 30 AN/AI patients receiving usual care, with information to prompt a discussion. Implementing effective, appropriate ACP is a high priority for Southcentral Foundation (SCF) and First Nations Community HealthSource (FNCH), two tribal health systems serving large populations of AN/AIs with serious, life-limiting illness. The proposed study will develop and evaluate a culturally congruent, patient- centered ACP intervention at these sites and will set the stage for a large, multi-site clinical trial of the intervention that could improve patient and caregiver outcomes among 5 million AN/AI Americans.