Advancing Palliative Care in Northern Plains American Indians

推进北部平原美洲印第安人的姑息治疗

• 批准号: 10291143
• 负责人: KATRINA ARMSTRONG
• 金额: $ 14.74万
• 依托单位: MASSACHUSETTS GENERAL HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-01 至 2022-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10291143
• 关键词: Address; American Indians; Anxiety; Area; Cancer Burden; Cancer Care Facilities; Cancer Death Rates; Cancer Patient; Caregivers; Caring; Censuses; Cheyenne; Collaborations; Communities; Community Health Aides; Development; Education; Emergency department visit; Enrollment; Family; Family member; Future; General Hospitals; Goals; Great Plains; Health; Health Personnel; Healthcare; Healthcare Systems; Home; Hospitalization; Hospitals; Inpatients; Intervention; Interview; Knowledge; Leadership; Malignant Neoplasms; Massachusetts; Methods; Modeling; Montana; North Dakota; Outcome; Outcome Assessment; Outcome Measure; Pain; Palliative Care; Patients; Phase; Population; Population Intervention; Preparation; Protocols documentation; Provider; Quality of Care; Quality of life; Research; Rivers; Rural; Rural Health; Rural Population; School Nursing; Service delivery model; Services; Social Conditions; South Dakota; State Government; Symptoms; Testing; Teton Sioux Indian; Time; Translating; Transportation; Tribes; United States; United States Indian Health Service; Universities; Walking; Work; base; cancer care; care coordination; care delivery; care outcomes; care systems; design; effectiveness evaluation; end of life; experience; healing; health care service utilization; improved; improved outcome; innovation; member; mortality; multidisciplinary; northern plains; novel; novel strategies; palliative; patient engagement; programs; rural area; rural dwellers; rural healthcare; rural setting; rural underserved; satisfaction; socioeconomics; tribal health; tribal healthcare; tribal lands; tribal leader; urban area

The quality of cancer care in the rural United States (US) is inadequate. The Northern Plains is one of the most rural areas of the US, including three states with the highest proportion of rural residents in the 2010 census (South Dakota, North Dakota and Montana). In the Northern Plains, the burden of cancer is not distributed equally with substantially higher cancer mortality among American Indians (AI) than Whites. Annual cancer death rates in this region are 338 per 100,000 for American Indians, compared to 223 for Whites. One of the greatest areas of need in cancer care for AIs in the Northern Plains is palliative care. Defined as the services needed to live well with serious illness, access to palliative care by this population is almost non-existent, particularly in areas like western South Dakota where many tribal lands are located. Because of distance to the nearest cancer care facility, inadequate transportation, and lack of community- based palliative care support, most AIs with cancer living on tribal lands are separated from their families during inpatient cancer care and die either alone in a hospital or at home suffering unnecessarily from symptoms such as pain and anxiety. This situation is particularly unacceptable given the the US governmental responsibility for tribal health care, the adverse socioeconomic conditions experienced by the tribes, and the importance the tribes place on spiritual preparation and community support at the end of life. This proposal arises from a collaboration of 8 programs dedicated to improving cancer care among AIs in Western South Dakota: the Walking Forward program of Avera Health, the Oglala, Sicangu and Cheyenne River Lakota tribes, the Great Plains Tribal Chairmen's Health Board, the School of Nursing at South Dakota State University, the Indian Health Service Great Plains Region, and the Rural Health and Palliative Care programs at Massachusetts General Hospital (MGH). These groups have come together to propose a two- phase study that will lead to a sustainable, culturally tailored, and effective palliative care program for AI cancer patients in Western South Dakota. In Phase 1, we will build upon formative work understanding palliative care needs, barriers and opportunities in American Indians in this area, palliative care educational programs developed at MGH/Harvard, and innovations in care delivery and patient engagement ongoing at MGH and elsewhere to create a culturally appropriate intervention for this population, focusing on two key components prioritized by stakeholders: (1) multidisciplinary provider education and (2) in-home support and care coordination through a palliative care focused community health worker program. In Phase 2, we will evaluate these components using an innovative quasi-experimental, factorial design, examining the combined and independent impact of the interventions on patient and caregiver outcomes, as well as provider knowledge and comfort. All phases of the project will be guided by a community advisory board composed of tribal health leaders and representative enrolled members from the three tribes.

美国农村（美国）的癌症护理质量不足。北平原是最多的平原之一 美国的农村地区，包括2010年人口普查中农村居民比例最高的三个州 （南达科他州，北达科他州和蒙大拿州）。在北部平原，癌症的负担没有分配 美国印第安人（AI）的癌症死亡率大大高于白人。年癌症 美国印第安人的死亡率为每100,000人338，而白人为223。 在北部平原的AIS癌症护理中最需要的领域之一是姑息治疗。 定义为患有严重疾病所需的服务，该人群获得姑息治疗是 几乎不存在，尤其是在许多部落土地所在的南达科他州等地区。 由于到最近的癌症护理机构的距离，运输不足以及缺乏社区 - 基于姑息治疗的支持，大多数患有癌症生活在部落土地上的AI与家人分开 在住院癌症护理期间，并且独自一人死亡，或者在家中不必要地遭受 疼痛和焦虑等症状。考虑到美国政府，这种情况尤其不可接受 部落卫生保健的责任，部落所经历的不利社会经济状况以及 部落在生命尽头的精神准备和社区支持的重要性。 该提案源于8个计划，致力于改善AIS的癌症护理 在南达科他州西部：Avera Health，Oglala，Singan和Cheyenne的前进计划 大平原部落董事长卫生委员会，南达科他州的护理学院 州立大学，印度卫生局大平原地区以及农村卫生和姑息治疗 马萨诸塞州综合医院（MGH）的计划。这些群体聚集在一起，提出了两个 阶段研究将导致AI癌的可持续，量身定制且有效的姑息治疗计划 南达科他州西部的患者。在第1阶段，我们将基于形成性的工作理解姑息治疗 在这一领域的美洲印第安人的需求，障碍和机会，姑息治疗教育计划 在MGH/哈佛大学开发，以及在MGH和 在其他地方为该人群创造适当的文化干预措施，重点关注两个关键组成部分 利益相关者优先：（1）多学科提供者教育和（2）家庭支持和护理 通过以姑息治疗为中心的社区卫生工作者计划进行协调。在第2阶段，我们将评估 这些组件使用创新的准实验，阶乘设计，研究合并和 干预措施对患者和护理人员结果的独立影响，以及提供者的知识和 舒适。该项目的所有阶段将由由部落健康组成的社区顾问委员会指导 领导人和代表参加了三个部落的成员。