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

基本信息

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
项目类别：
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

项目摘要

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.

项目概要标题：探索临终关怀：A'aninin 和 Nakoda 部落的获取和观点。美洲原住民因癌症、心脏病和肝癌等严重疾病而死亡率较高患病率高于美国所有其他种族和族裔群体。人们越来越认识到需要为原住民社区提供文化上适当且可接受的临终关怀。尽管传统的扩张在全国范围内的临终关怀和姑息治疗计划中，520 万美国原住民正在经历地理上的长期痛苦流离失所、贫困和殖民化的影响，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关怀，但可能会犹豫是否拒绝或退出由于历史上对医疗机构的不信任而采取的干预措施。由于长期的社会排斥，原住民美国人在姑息治疗和临终关怀研究中的代表性严重不足，这使得他们对许多人来说是“隐形”人口。本研究采用序贯探索性混合方法旨在探索 A'aninin 和 Nakoda 民族之间的临终关怀服务和观点贝尔纳普堡印第安社区。这将通过以下具体目标来实现：目标 1：探索：a) 对死亡、临终和丧亲之痛的看法，b) 对临终关怀和丧亲之痛的认识和态度贝尔纳普堡保留地的 Aaniiih 和 Nakoda 部落成员的姑息治疗服务模式使用定性焦点小组和个人访谈。目标 2：描述文化认同、社区如何掌握程度、灵性和护理人员负担影响患者和患者的护理和支持性护理需求的障碍贝尔纳普堡保留地的 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。目标 3：了解解决姑息治疗差异框架，并在与部落咨询委员会合作，解释和整合调查结果以制定指导解决贝尔纳普堡阿尼宁和纳科达部落成员未满足需求的原则预订。这项研究将产生基础证据，为有针对性的未来发展提供信息解决美洲原住民社区独特的临终关怀需求的干预措施，这是一个高风险美国人口受到健康不平等、死亡和残疾的影响尤为严重。

项目成果

期刊论文数量（2）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

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

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