Lay Coach-led Early Palliative Care for Underserved Advanced Cancer Caregivers

为服务不足的晚期癌症护理人员提供非专业教练主导的早期姑息治疗

• 批准号: 10524204
• 负责人: James N. Dionne-Odom
• 金额: $ 15.8万
• 依托单位: UNIVERSITY OF ALABAMA AT BIRMINGHAM
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-07-10 至 2025-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10524204
• 关键词: Academy; Address; Adult; Advance Care Planning; Advanced Malignant Neoplasm; African American; African American population; American; Anxiety; Attention; Awareness; Behavioral; Bereavement; Cancer Center; Cancer Patient; Care given by nurses; Caregiver Burden; Caregiver support; Caregivers; Caring; Collaborations; Communities; Complex; Decision Making; Diagnosis; Dissemination and Implementation; Distress; Effectiveness; Family Caregiver; Family health status; Family member; Formal caregiver; Friends; Future; Health; Healthcare; Hospitals; Hybrids; Individual; Interdisciplinary Study; Intervention; Knowledge; Life; Malignant Neoplasms; Measures; Mediator of activation protein; Medicine; Mental Depression; Mental Health; Modeling; Morbidity - disease rate; Newly Diagnosed; Nurses; Outcome; Outpatients; Palliative Care; Participant; Patient-Focused Outcomes; Patients; Persons; Play; Population; Process; Professional Practice; Psychologist; Public Health; Quality of life; Readiness; Reporting; Reproducibility; Research; Research Design; Role; Rural Minority; Sampling; Services; Social support; Standardization; Stress; Stress and Coping; Techniques; Testing; Training; Underserved Population; Work; acceptability and feasibility; advanced disease; base; care recipients; care systems; caregiver interventions; caregiving; coping; cost; cost effectiveness; effectiveness testing; effectiveness-implementation randomized trial; end of life; experience; feasibility testing; follow-up; formative assessment; global health; health care service utilization; implementation cost; implementation evaluation; implementation trial; improved; indexing; innovation; multi-component intervention; patient home care; physical conditioning; pilot test; prevent; psychoeducation; recruit; response; rural African American; rural dwellers; rural residence; rural underserved; screening; service delivery; skills; stress management; symposium; systematic review; telehealth; telephone session; theories; therapy design; treatment as usual

Many of the 2.8 million family caregivers (FCGs) of persons with advanced cancer are underserved, particularly African-Americans and rural-dwellers in the Southern U.S.. Most have poor access and awareness of community-based palliative care services and have received no formal support or training despite providing assistance to their relatives an average of 8 hrs/day. Providing intense care and witnessing a close friend or family member struggle with advanced cancer can result in FCGs experiencing marked distress, particularly as their care recipients near end of life (EOL). Reports from NCI and NINR caregiving summits, systematic reviews, and the National Academy of Medicine have highlighted major limitations of cancer caregiver interventions, including a lack of attention to underserved populations and cost, poor scalability, over reliance on highly-trained professionals (e.g., nurses, psychologists, behavioral therapists), lengthy sessions over a short duration, and a lack of demonstrated impact on patient outcomes and healthcare utilization. To address this gap, we have developed and tested feasibility and acceptability of a lay navigator-led early palliative care intervention called ENABLE Cornerstone for rural and minority family caregivers of persons with advanced cancer in the Southern U.S.. Evolving out of our prior trials and community stakeholder formative evaluation work, this multicomponent intervention is based on Pearlin’s Stress-Health Process Model where lay navigators, overseen by an interdisciplinary outpatient palliative care team, employ health coaching techniques and caregiver distress screening to behaviorally activate and reinforce psychoeducation on managing stress and coping, getting and asking for help, improving caregiving skills, and decision-making/advance care planning over 6 brief in-person/telephonic sessions plus monthly follow-up from diagnosis through early bereavement. This proposed hybrid type I randomized effectiveness-implementation trial will determine whether ENABLE Cornerstone compared to usual care can improve family caregiver (Aim 1) and patient outcomes (Aim 2) and will evaluate implementation costs, cost effectiveness and healthcare utilization (Aim 3), over 24 weeks with 294 family caregivers and their patients with newly-diagnosed advanced cancer. To maximize recruitment, we will recruit from two community cancer centers in Birmingham, AL and Mobile, AL. Our theory-driven, standardized approach is innovative because it uses lay navigators in collaboration with a palliative care interdisciplinary team to promote caregiver activation, skills and knowledge enhancement, as opposed to other difficult-to-implement intervention models that rely mostly on delivery of services by advanced practice professionals providing lengthy sessions over a short duration. If effectiveness is established, the ENABLE Cornerstone intervention offers a highly scalable and reproducible model of formal caregiver support that would be primed for dissemination and implementation.

在280万晚期癌症患者的家庭照顾者(FCG)中，许多人得不到足够的服务， 尤其是美国南部的非裔美国人和农村居民。大多数人的访问和意识都很差 以社区为基础的姑息治疗服务，尽管提供了 向他们的亲属提供平均每天8小时的援助。提供严密的照顾并见证一位亲密的朋友或 家庭成员与晚期癌症的斗争可能会导致FCGS经历明显的痛苦，特别是在 他们的护理对象生命接近尾声(EOL)。NCI和NINR护理峰会的报告，系统 评论和国家医学科学院强调了癌症照顾者的主要局限性 干预措施，包括对服务不足的人群和成本缺乏关注、可扩展性差、过度依赖 关于训练有素的专业人员(如护士、心理学家、行为治疗师)，长达 持续时间短，且缺乏对患者结局和医疗保健利用率的明显影响。致信地址 在这一差距下，我们开发并测试了非专业导航员主导的早期姑息治疗的可行性和可接受性 被称为为农村和少数族裔老年人家庭照顾者提供支持的干预措施 美国南部的癌症。从我们之前的试验和社区利益相关者形成性评估中发展而来 工作中，这种多成分干预是基于皮尔林的压力-健康过程模型 导航员由一个跨学科的门诊姑息治疗小组监督，使用健康指导技术 和照顾者痛苦筛查，以行为激活和加强管理压力的心理教育 以及应对、获得和请求帮助、提高护理技能以及决策/高级护理 规划超过6次简短的面对面/电话会议，外加从诊断到早期的每月跟踪 丧亲之痛。这项拟议的混合型I型随机有效性实施试验将确定 与常规护理相比，启用基石是否可以改善家庭照顾者(目标1)和患者 成果(目标2)，并将评估实施成本、成本效益和医疗保健利用率(目标2 3)，超过24周，与294名家庭照顾者及其新诊断的晚期癌症患者在一起。至 最大化招聘，我们将从亚利桑那州伯明翰和亚利桑那州莫比尔的两个社区癌症中心招聘。 我们的理论驱动的标准化方法是创新的，因为它使用非专业导航员与 姑息治疗跨学科团队，以促进照顾者的激活、技能和知识的增长，如 与其他难以实施的干预模式相反，这些模式主要依赖于高级 实践专业人员在短时间内提供长时间的课程。如果建立了有效性， 启用基石干预提供高度可扩展和可重现的正式照顾者支持模式 这将为传播和实施做好准备。