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：
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
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/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

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.

患有晚期癌症患者的280万家庭护理人员（FCG）中有许多人都在服务不足，特别是美国南部的非裔美国人和农村居民。基于社区的姑息治疗服务，尽管提供了正式的支持或培训平均每天提供8小时的协助。家庭成员与晚期癌症斗争可能会导致FCGS经历明显的困扰，部分地为他们的护理量接近生命（EOL）。评论，以及癌症护理人医学医学医学医学医学学院干预措施，包括缺乏对服务不足的爆裂和成本，可扩展性差，重新考虑的关注关于训练有素的专业人员（例如护士，心理学家，行为治疗师），漫长的会议持续时间短，缺乏对患者结局和医疗保健利用的影响我们已经开发和测试了盛宴的可行性和可接受性，由外行导航员领导的早期养护护理干预措施称为启用基石的福料和少数人的护理人员美国南部的癌症。工作，该多组分基于珍珠链的压力健康过程模型，其中导航员，过度的支出姑息治疗团队，就业教练技术和护理人员的遇险筛查以行为激活并加强在管理压力方面的心理教育以及应对，获得和寻求帮助，提高护理技能以及一些决策/预先护理计划超过6个简短的面对面/电话会议，以及诊断到早期的每月随访丧亲。与通常的护理相比，启用基石是否可以改善家庭护理人员（AIM 1）和患者结果（AIM 2），并将评估含义成本，成本效益的护理利用（AIM 3），在24周内，有294个家庭护理人员及其新诊断的晚期癌症患者最大化招聘，我们将从阿拉巴马州伯明翰和莫比尔的两个社区癌症中心招募。我们以理论驱动的标准化方法是创新的元素，因为它与一个合作使用了外行导航器姑息治疗跨学科以促进照顾者激活，技能和知识增强，如反对其他difficalt-to-implement实施模型，该模型主要由高级服务相关联实践专业人士在短时间内提供冗长的会议。启用Cornerstone干预提供了正式护理人员支持的高度可扩展和可重复的模型这将是为了传播和实施而准备的。