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

在280万晚期癌症患者的家庭照顾者中，许多人得不到充分的服务， 尤其是非洲裔美国人和美国南部的农村居民。大多数人缺乏机会和认识 社区姑息治疗服务，尽管提供了 平均每天为亲属提供8小时的帮助。提供强烈的照顾和见证一个亲密的朋友或 家庭成员与晚期癌症的斗争可能导致FCG经历明显的痛苦，特别是当 他们的照顾者接近生命的尽头（EOL）。来自NCI和NINR的系统性会议报告 回顾，和国家医学科学院强调了癌症护理人员的主要局限性 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 训练有素的专业人员（例如，护士，心理学家，行为治疗师），在一个漫长的会议， 持续时间短，对患者结局和医疗保健利用缺乏明显影响。解决 这一差距，我们已经开发和测试的可行性和可接受性的外行导航领导的早期姑息治疗 为农村和少数民族家庭照顾者提供帮助的干预措施， 癌症在美国南部从我们之前的试验和社区利益相关者形成性评估中发展出来 工作，这种多组分干预是基于Pearlin的压力-健康过程模型，其中奠定 在跨学科的门诊姑息治疗团队的监督下， 和照顾者痛苦筛查，以在行为上激活和加强管理压力的心理教育 和应对，获得和寻求帮助，提高决策技能和决策/预先护理 计划超过6次简短的面对面/电话会议，加上从诊断到早期的每月随访 丧亲这项拟议的混合I型随机有效性-实施试验将确定 与常规护理相比，ENABLE Cornerstone是否可以改善家庭护理者（目标1）和患者 结果（目标2），并将评估实施成本，成本效益和医疗保健利用（目标 3），超过24周，294名家庭照顾者及其新诊断的晚期癌症患者。到 最大限度地招募，我们将从两个社区癌症中心在伯明翰，AL和移动的，AL招募。 我们的理论驱动，标准化的方法是创新的，因为它使用外行导航员与 姑息治疗跨学科团队，以促进护理人员的激活，技能和知识的提高， 与其他难以实施的干预模式相反，这些模式主要依赖先进的医疗机构提供服务， 实践专业人员在短时间内提供长时间的会议。如果确定有效性， ENABLE Cornerstone干预提供了一个高度可扩展和可复制的正式护理人员支持模型 这将为传播和执行作好准备。

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.