Advancing Palliative Care in Northern Plains American Indians

美国农村地区的癌症护理质量不足。北方平原是世界上 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）。在北方平原，癌症的负担不是分布的 同样，美洲印第安人（AI）的癌症死亡率也比白人高得多。年癌 该地区的死亡率为每10万名印第安人中有338人死亡，而白人为223人。 在北方平原，人工智能癌症护理最需要的领域之一是姑息治疗。 被定义为患有严重疾病时生活良好所需的服务，这一人群获得姑息治疗的机会 几乎不存在，特别是在像南达科他州西部这样的地区，那里有许多部落的土地。 由于距离最近的癌症护理机构较远，交通不便，缺乏社区- 基于姑息治疗支持，大多数生活在部落土地上的癌症患者与家人分离， 在住院癌症护理期间，独自在医院或家中死亡， 疼痛和焦虑等症状。这种情况是特别不可接受的，因为美国政府 对部落保健的责任、部落所经历的不利社会经济条件以及 在生命的尽头，部落重视精神准备和社区支持。 这项建议来自8个致力于改善AI癌症护理的项目的合作 在西南达科他州：阿韦拉健康，奥格拉拉，西坎古和夏延的步行前进计划 拉科塔河部落、大平原部落主席健康委员会、南达科他州护理学院 州立大学、大平原地区印度卫生服务局和农村卫生和姑息治疗局 在马萨诸塞州总医院（MGH）。这些团体聚集在一起提出了两个- 阶段研究，这将导致一个可持续的，文化上定制的，有效的姑息治疗计划，为AI癌症 南达科他州的病人。在第一阶段，我们将建立在理解姑息治疗的基础上 需求，障碍和机会，在美洲印第安人在这方面，姑息治疗教育计划 在MGH/哈佛开发，在护理服务和患者参与方面的创新正在MGH进行， 在其他地方，为这一群体创造文化上适当的干预措施，重点是两个关键组成部分， 利益攸关方优先考虑：（1）多学科提供者教育和（2）家庭支持和护理 通过以姑息治疗为重点的社区卫生工作者计划进行协调。在第二阶段，我们将评估 这些组件使用创新的准实验，析因设计，检查组合， 干预措施对患者和护理人员结局的独立影响，以及提供者的知识和 令人担心该项目的所有阶段都将由一个社区咨询委员会指导， 领导人和代表从三个部落中招募成员。

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.