Building Capacity for Rural Integrated Palliative Care: Bridges to Healthy Transi

描述（由申请人提供）：目前有9000万美国人患有慢性疾病并最终将死于慢性疾病。慢性病造成的经济负担每年达到惊人的1.3万亿美元。许多患有复杂慢性疾病的人在经历无数次护理转变的同时，还会经历严重疲劳、呼吸困难、呼吸困难和疼痛等衰弱症状，直至死亡。在农村地区尤其如此，那里的贫困率、残疾率和过早死亡率在全国名列前茅。综合姑息治疗有望提高从诊断开始的护理质量和连续性。关于将姑息治疗概念纳入紧张的卫生基础设施的实际方面或其在农村非专业和专业利益相关者中的可接受性，人们知之甚少。本研究的总体目的是评估姑息治疗的需求和机会，将姑息治疗纳入正规和非正规护理过程中复杂慢性疾病的成人在过渡的阿巴拉契亚社区。具体而言，本研究旨在：(1)描述正式和非正式慢性护理转变的交集。访谈、焦点小组和参与者观察产生的数据将按主题进行分析，以捕捉长期护理的结构、过程和转变。(2)描述和分析随着时间的推移，农村文化对护理的生理、心理、精神和过渡方面的管理的影响。访谈和参与者观察数据将按被调查者分组组织，进行主题分析，并进行组内组间比较。(3)从患者、家庭、健康和社会服务专业人员的角度描述和分析综合姑息治疗的障碍和促进因素。访谈、焦点小组和调查数据将进行分析，并在被调查者群体和设置之间进行比较。本科护理和社会工作专业的学生将协助社区评估活动，以捕捉更广泛的社区背景。NCP《优质姑息治疗指南》是用于数据收集和分析的敏感框架。PI、共同调查人员和顾问在民族志、社区慢性护理、社区参与和农村贫困社区的外行辅助干预方面具有专业知识。预计当成功完成后，这项研究将导致确定量身定制的非专业/专业干预措施，以提高复杂疾病连续体的护理质量和连续性。

DESCRIPTION (provided by applicant): 90 million Americans are currently living with and will eventually die from chronic illnesses. The economic burden of chronic illness is a staggering $1.3 trillion annually. Many with complex chronic illness struggle to navigate myriad transitions in care while experiencing debilitating symptoms such as profound fatigue, dyspnea, breathlessness and pain for years prior to death. This is especially true in rural areas where rates of poverty, disability, and premature deaths are among the highest in the nation. Integrated palliative care promises to improve the quality and continuity of care from diagnosis forward. Very little is known about the practical aspects of integrating palliative care concepts into strained health infrastructures or their acceptability among rural lay and professional stakeholders. The overall purpose of this study is to assess the palliative care needs and opportunities to integrate palliative care into formal and informal care processes for adults with complex chronic illness in a transitioning Appalachian community. Specifically, the study aims to: (1) describe the intersection of formal and informal chronic care transitions. Data generated from interviews, focus groups, and participant observation will be thematically analyzed to capture structures, processes and transitions in care over time. (2) Describe and analyze the influence of rural culture on the management of physical, psychosocial, spiritual and transitional aspects of care over time. Interview and participant observation data will be organized by respondent group, analyzed thematically and within and between group comparisons made. (3) Describe and analyze barriers and facilitators to integrated palliative care from the perspectives of patients, families, and health and social service professionals. Interview, focus group and survey data will be analyzed and comparisons made across respondent groups and settings. Undergraduate nursing and social work students will assist with community assessment activities to capture the broader community context. The NCP Guidelines for Quality Palliative Care is the sensitizing framework used for data collection and analysis. The PI, co-investigators and consultants have expertise in ethnography, community-based chronic care, community engagement and lay helper interventions in rural, distressed communities. It is expected that when successfully completed, this study will to lead to the identification of tailored lay/professional interventions to improve the quality and continuity of care across complex illness continuums. PUBLIC HEALTH RELEVANCE: The study will provide a more comprehensive understanding of the socio-cultural context of living with and caring for adults with complex chronic illness in rural areas. This information is critical to the efficacy of interventions that aim to reduce rural health disparities by preventing and reducing the human and economic burdens associated with complex chronic illness, a national public health priority.