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：探索临终关怀：A'aninin和Nakoda部落之间的访问和观点。 由于癌症、心脏病和肝病等严重疾病，美洲原住民的死亡率更高 比美国所有其他种族和族裔群体的疾病。人们越来越认识到， 为土著社区提供文化上适当和可接受的临终关怀。尽管传统的 临终关怀和姑息治疗计划在全国范围内，美国的520万原住民是持久的地理 流离失所、贫困和殖民化的后果，对获得服务构成重大挑战。 许多美国原住民接受高强度的临终关怀，并且可能会犹豫拒绝或退出 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， 美国人在姑息治疗和临终关怀研究中的代表性严重不足， 对许多人来说是“看不见的”人口。采用序贯探索性混合方法，本研究 旨在探索A'aninin和Nakoda国家之间的临终关怀服务和观点， Fort Belknap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，垂死和丧亲之痛的看法，以及B）对临终关怀的认识和态度， 贝尔纳普堡保留地Aaniih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：描述文化身份、社区 掌握、灵性和护理者负担影响患者护理和支持性护理需求的障碍， 在贝尔纳普堡保留地的Aaniih和Nakoda家庭照顾者中， 使用横截面调查。目标3：以解决姑息治疗差异框架为依据， 与部落咨询委员会合作，解释和整合调查结果， 解决贝尔纳普堡A'aninin和Nakoda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，为未来的发展提供信息。 干预措施解决了美国土著社区独特的临终关怀需求，这是一个高风险的问题。 人口，不成比例地受到美国健康不平等，死亡和残疾的影响。

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