Advancing Palliative Care in Northern Plains American Indians

美国农村地区的癌症护理质量不高。北部平原是世界上 美国农村地区，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 同样，美国印第安人(AI)的癌症死亡率比白人高得多。年度癌症 在这个地区，美国印第安人的死亡率为每10万人中有338人，而白人为223人。 在北部平原的人工智能中，最需要癌症护理的领域之一是姑息治疗。 被定义为在患有严重疾病的情况下良好生活所需的服务，这些人口获得姑息治疗的机会是 几乎不存在，特别是在南达科他州西部等许多部落土地所在的地区。 由于距离最近的癌症护理机构很远，交通不便，而且缺乏社区- 基于姑息治疗的支持，大多数生活在部落土地上的患有癌症的人工智能与家人分离。 在住院癌症护理期间，孤独地死在医院或家中，遭受不必要的 疼痛和焦虑等症状。这种情况尤其令人无法接受，因为美国政府 部落保健的责任、部落经历的不利社会经济状况以及 部落重视临终前的精神准备和社区支持。 这项建议源于8个项目的合作，这些项目致力于改善认可机构的癌症护理。 在南达科他州西部：Avera Health、Oglala、Sinangu和Cheyenne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 国立大学、印度卫生服务大平原地区和农村卫生与姑息护理 马萨诸塞州综合医院(MGH)的项目。这些团体联合起来提出了两项建议- 阶段研究将导致可持续的、文化上量身定做的、有效的人工智能癌症姑息治疗计划 南达科他州西部的患者。在第一阶段，我们将建立在理解姑息治疗的形成性工作的基础上 美国印第安人在这一领域的需求、障碍和机会、姑息关怀教育计划 在麻省理工学院/哈佛大学开发，并在麻省理工学院和哈佛大学进行护理提供和患者参与方面的创新 在其他地方为这一人群创建文化上合适的干预措施，重点是两个关键组成部分 利益相关者优先考虑：(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 这些成分采用了创新的准实验、析因设计，考察了组合和 干预措施对患者和照顾者结局以及提供者知识和 舒适。该项目的所有阶段都将由一个由部落健康组成的社区咨询委员会进行指导 三个部落的首领和代表登记了成员。

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.