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

基本信息

批准号：
10214574
负责人：
James N. Dionne-Odom
金额：
$ 55.3万
依托单位：
UNIVERSITY OF ALABAMA AT BIRMINGHAM
依托单位国家：
美国
项目类别：
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/10214574
关键词：
Academy Address Adult Advance Care Planning Advanced Malignant Neoplasm African American 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 Telephone 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 trial improved indexing innovation multi-component intervention patient home care physical conditioning prevent psychoeducation recruit response rural African American rural dwellers rural residence rural underserved screening service delivery skills stress management symposium systematic review telehealth theories therapy design treatment as usual

项目摘要

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.

280 万晚期癌症患者的家庭护理人员 (FCG) 中的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。大多数人的接触机会和意识较差的社区姑息治疗服务，尽管提供了这些服务，但没有得到正式的支持或培训平均每天为亲属提供 8 小时的帮助提供密切的照顾并见证亲密的朋友或人。家庭成员与晚期癌症的斗争可能会导致 FCG 经历明显的痛苦，特别是当来自 NCI 和 NINR 护理峰会的系统性报告。审查和国家医学院强调了癌症护理人员的主要局限性干预措施，包括缺乏对服务不足的人群和成本的关注、可扩展性差、过度依赖对训练有素的专业人员（例如护士、心理学家、行为治疗师）进行长时间的培训持续时间短，且对患者治疗结果和医疗保健利用率缺乏明显影响。针对这一差距，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名为“ENABLE Cornerstone”的干预措施，旨在为农村和少数族裔家庭照顾患有晚期疾病的人提供帮助美国南部的癌症是由我们之前的试验和社区利益相关者形成性评估演变而来的工作中，这种多成分干预基于 Pearlin 的压力-健康过程模型，其中导航员在跨学科门诊姑息治疗团队的监督下，采用健康指导技术和护理人员的压力筛查，以行为激活和加强压力管理教育以及应对、获得和寻求帮助、提高护理技能以及决策/预先护理计划超过 6 次简短的面对面/电话会议以及从诊断到早期的每月随访这项拟议的混合 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人员（目标 1）和患者的情况结果（目标 2）并将实施评估成本、成本效益和医疗保健利用率（目标 3），在 24 周内对 294 名家庭护理人员及其新诊断的晚期癌症患者进行了研究。为了最大限度地招募人员，我们将从阿拉巴马州伯明翰和阿拉巴马州莫比尔的两个社区癌症中心招募人员。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，促进护理人员的积极性、技能和知识的增强，与其他难以实施的干预模式相反，这些模式主要依赖于先进的服务提供实践专业人士在短时间内提供长时间的课程如果有效的话， ENABLE Cornerstone 干预提供了高度可扩展和可重复的正式护理人员支持模型这将为传播和实施做好准备。