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

描述(申请人提供)：9000万美国人目前患有慢性病，并最终将死于慢性病。慢性病造成的经济负担每年高达惊人的1.3万亿美元。许多患有复杂慢性病的人在经历严重疲劳、呼吸困难、呼吸困难和疼痛等令人衰弱的症状的同时，在死亡前的几年里难以驾驭护理的无数过渡。在农村地区尤其如此，那里的贫困、残疾和过早死亡率是全国最高的之一。综合姑息治疗承诺从诊断开始就提高护理的质量和连续性。人们对将姑息治疗概念纳入紧张的保健基础设施的实际方面或其在农村、外行和专业利益攸关方中的接受度知之甚少。这项研究的总体目的是评估阿巴拉契亚转型社区中患有复杂慢性病的成年人的姑息治疗需求和机会，将姑息治疗整合到正式和非正式护理过程中。具体地说，这项研究的目的是：(1)描述正式和非正式慢性护理过渡的交叉。访谈、焦点小组和参与者观察产生的数据将被主题分析，以捕捉随着时间的推移护理中的结构、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受访者小组进行组织，按主题进行分析，并进行小组内和小组之间的比较。(3)从患者、家庭、卫生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者。访谈、焦点小组和调查数据将被分析，并在不同的受访者群体和环境中进行比较。护理和社会工作本科生将协助社区评估活动，以捕捉更广泛的社区背景。NCP质量姑息护理指南是用于数据收集和分析的敏感框架。在人种志、基于社区的慢性护理、社区参与和农村贫困社区的业馀帮手干预方面，PI、合作调查员和顾问具有专业知识。预计在成功完成后，这项研究将导致确定量身定做的非专业/专业干预措施，以改善复杂疾病连续治疗的质量和连续性。 公共卫生相关性：这项研究将更全面地了解在农村地区与患有复杂慢性病的成年人共同生活和照顾的社会文化背景。这些信息对于旨在通过预防和减轻与国家公共卫生优先事项--复杂慢性病相关的人力和经济负担来缩小农村健康差距的干预措施的效力至关重要。

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.