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: 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
• 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

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护者中，许多人得不到充分的服务。