Exploring End-of-Life Care: Access and Perspectives among the A'aniniiin and Nakoda Tribes

探索临终关怀：Aaniniiin 和 Nakoda 部落的获取和观点

• 批准号: 10485183
• 负责人: Katie Elizabeth Nelson
• 金额: $ 2.88万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-12-11 至 2023-06-10
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10485183
• 关键词: Address; Affect; Anxiety; Attitude; Awareness; Belief; Bereavement; COVID-19 pandemic; Caregiver Burden; Caring; Cessation of life; Collaborations; Communities; Coupled; Cross-Sectional Studies; Data; Death Rate; Development; Diagnosis; Disease; Disparity; Distress; Elderly; Ensure; Ethnic Population; Exclusion; Family; Family Caregiver; Focus Groups; Future; Geography; Health Personnel; Health Services Accessibility; Heart Diseases; Hospice Care; Hospitalization; Human Rights; Indian reservation; Indigenous; Individual; Institutional Racism; Intervention; Interview; Letters; Liver diseases; Location; Malignant Neoplasms; Medical; Mental Depression; Methodology; Methods; Modeling; National Institute of Nursing Research; Native Americans; Palliative Care; Patients; Persons; Phase; Philosophy; Population; Poverty; Public Health Nursing; Quality of life; Research; Reservations; Resolution; Resources; Service delivery model; Services; Shapes; Social Justice; Spirituality; Strategic Planning; Stress; Supportive care; Time; Trauma; Tribal Council; Tribes; United States; Voice; Work; barrier to care; care systems; commune; community based participatory research; disability; end of life; end of life care; experience; health disparity; health inequalities; high risk population; hospice environment; improved; insight; interdisciplinary approach; loved ones; member; mortality; programs; racial population; social; social exclusion; tribal member

PROJECT SUMMARY Title: Exploring End-of-Life Care: Access and Perspectives among the A'aninin and Nakoda Tribes. Native Americans experience higher mortality due to serious illnesses like cancer, heart disease, and liver disease than all other racial and ethnic groups in the United States. There is growing recognition of the need for culturally appropriate and acceptable end-of-life care for Native communities. Despite expansion of traditional hospice and palliative care programs nationally, the 5.2 million Natives in the U.S. are enduring geographic displacement, poverty, and fallout from colonization, which poses significant challenges for accessing services. Many Native Americans receive high-intensity end-of-life care, and can be hesitant to decline or withdraw interventions due to historical mistrust of the medical establishment. Due to perpetual social exclusion, Native Americans have been sorely underrepresented in palliative care and end-of-life care research, rendering them an `invisible' population to many people. Using a sequential exploratory mixed methods approach, this study aims to explore end-of-life care access and perspectives among the A'aninin and Nakoda Nations from the Fort Belknap Indian Community. This will be accomplished through the following specific aims: Aim 1: Explore: a) perspectives on death, dying, and bereavement, and b) awareness and attitudes about hospice and palliative care service models among Aaniiih and Nakoda tribe members from the Fort Belknap Reservation using qualitative focus groups and individual interviews. Aim 2: Describe how cultural identity, communal mastery, spirituality, and caregiver burden impact barriers to care and supportive care needs for patients and families enduring serious illness, among Aaniiih and Nakoda family caregivers of the Fort Belknap Reservation using a cross-sectional survey. Aim 3: Informed by an Addressing Palliative Care Disparities framework, and in collaboration with the Tribal Advisory Board, interpret and integrate findings to develop guiding principles to address unmet needs for members of the A'aninin and Nakoda Nations of the Fort Belknap Reservation. This study will generate foundational evidence to inform the future development of targeted interventions addressing the unique end-of-life care needs for Native American communities, a high-risk population, disproportionately impacted by health inequities, death, and disability in the United States.

项目摘要 标题：探索寿命终止护理：A'aninin和Nakoda部落之间的访问和观点。 美国原住民由于严重疾病，如癌症，心脏病和肝脏而经历更高的死亡率 疾病比美国所有其他种族和种族群体。人们对需要的需求越来越多 对本地社区的文化适当且可接受的临终护理。尽管扩大了传统 全国范围内的临终关怀和姑息治疗计划，美国的520万当地人正在持久地理 殖民化的流离失所，贫穷和后果，这给获得服务带来了重大挑战。 许多美洲原住民接受高强度的临终护理，并且可能犹豫不决或退出 由于医疗机构的历史不信任而引起的干预措施。由于永久社会排斥，本地人 美国人在姑息治疗和临终护理研究中的代表不足 对许多人来说是一个“无形的”人群。使用顺序探索性混合方法方法，本研究 旨在探索A'aninin和Nakoda国家之间的临终关怀访问和观点 Belknap堡印度社区。这将通过以下特定目的完成：目标1： 探索：a）关于死亡，垂死和丧亲的观点，以及b）对临终关怀和态度的认识和态度 Aaniiih和Nakoda Tribe Fort Belknap保留地的姑息治疗服务模型 使用定性焦点小组和个人访谈。目标2：描述文化身份，公共方式 掌握，灵性和照顾者负担会影响患者的护理和支持护理需求的障碍， 在Belknap保留地的Aaniiih和Nakoda家庭护理人员中，患有严重疾病的家庭 使用横断面调查。 AIM 3：通过解决姑息治疗差异框架和IN告知 与部落顾问委员会合作，解释和整合发现以发展指导 解决贝尔克纳普堡A'aninin和Nakoda国家成员未满足需求的原则 预订。这项研究将产生基本证据，以告知目标的未来发展 针对美洲原住民社区的独特临终护理需求的干预措施，这是一种高风险 人口受到美国健康不平等，死亡和残疾的影响不成比例的。

项目成果

Sociodemographic Disparities in Access to Hospice and Palliative Care: An Integrative Review.

• DOI: 10.1177/1049909120985419
• 发表时间: 2021-11
• 期刊: The American journal of hospice & palliative care
• 作者: Nelson KE;Wright R;Peeler A;Brockie T;Davidson PM
• 通讯作者: Davidson PM

Strategies for culturally safe research with Native American communities: an integrative review.

• DOI: 10.1080/10376178.2021.2015414
• 发表时间: 2022-02
• 期刊: CONTEMPORARY NURSE
• 影响因子: 1.6
• 作者: Brockie, Teresa N.;Hill, Kyle;Davidson, Patricia M.;Decker, Ellie;Krienke, Lydia Koh;Nelson, Katie E.;Nicholson, Natalie;Werk, Alicia M.;Wilson, Deborah;Him, Deana Around
• 通讯作者: Him, Deana Around