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

农村综合姑息治疗能力建设：通往健康交通的桥梁

• 批准号: 7981125
• 负责人: Katharine Joy Buck
• 金额: $ 37.8万
• 依托单位: WEST VIRGINIA UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2010
• 资助国家: 美国
• 起止时间: 2010-08-19 至 2014-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7981125
• 关键词: Address; Adult; American; Appalachian Region; Caregivers; Caring; Cessation of life; Chronic Care; Chronic Disease; Clinical; Communities; Complex; Consensus; Consultations; Continuity of Patient Care; Data; Data Collection; Development; Diagnosis; Discipline; Discipline of Nursing; Distress; Dyspnea; Early identification; Economic Burden; Ethnography; Expert Opinion; Family health status; Fatigue; Focus Groups; Guidelines; Health; Human; Intervention; Interview; Lead; Life; Medical; Modeling; Morphologic artifacts; Pain; Palliative Care; Participant; Patients; Policies; Poverty; Process; Provider; Quality of life; Research Infrastructure; Research Personnel; Respondent; Rural; Rural Health; Science; Services; Social Work; Structure; Students; Surveys; Symptoms; System; Time; Translations; Treatment Efficacy; base; care systems; comparison group; disability; experience; health disparity; improved; innovation; medically underserved; meetings; novel; population health; premature; prevent; psychosocial; public health priorities; public health relevance; rural area; underserved rural area

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.

描述（由申请人提供）：目前有 9000 万美国人患有慢性疾病，并将最终死于慢性疾病。慢性病每年造成的经济负担高达 1.3 万亿美元。许多患有复杂慢性疾病的人在死亡前的几年里都在经历各种令人衰弱的症状，例如严重疲劳、呼吸困难、呼吸困难和疼痛等，在护理过程中挣扎着度过无数的转变。在农村地区尤其如此，那里的贫困率、残疾率和过早死亡率是全国最高的。综合姑息治疗有望提高从诊断开始的护理质量和连续性。人们对将姑息治疗概念融入紧张的卫生基础设施的实际方面或其在农村非专业人士和专业利益相关者中的可接受性知之甚少。本研究的总体目的是评估阿巴拉契亚社区转型期患有复杂慢性病的成年人的姑息治疗需求和将姑息治疗纳入正式和非正式护理流程的机会。具体而言，该研究旨在：（1）描述正式和非正式慢性护理转变的交叉点。将对访谈、焦点小组和参与者观察产生的数据进行主题分析，以捕捉随时间推移的护理结构、流程和转变。 (2) 描述并分析随着时间的推移，乡村文化对护理的身体、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群体组织，进行主题分析并进行组内和组间比较。 (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。将分析访谈、焦点小组和调查数据，并在受访者群体和环境之间进行比较。护理和社会工作本科生将协助社区评估活动，以了解更广泛的社区背景。 NCP 优质姑息治疗指南是用于数据收集和分析的敏化框架。首席研究员、联合研究者和顾问在人种学、基于社区的慢性病护理、社区参与以及农村贫困社区的非专业帮助干预方面拥有专业知识。预计，成功完成后，这项研究将导致确定定制的非专业/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。 公共卫生相关性：该研究将更全面地了解农村地区患有复杂慢性疾病的成年人的生活和护理的社会文化背景。这些信息对于旨在通过预防和减少与复杂慢性病相关的人力和经济负担来减少农村健康差距的干预措施的有效性至关重要，这是国家公共卫生的优先事项。