Grant Number:	1R37CA252868-01 Interpret this number
Primary Investigator:	Dionne-Odom, James
Organization:	University Of Alabama At Birmingham
Project Title:	Lay Coach-Led Early Palliative Care for Underserved Advanced Cancer Caregivers
Fiscal Year:	2020

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.




The Project ENABLE Cornerstone randomized controlled trial: study protocol for a lay navigator-led, early palliative care coaching intervention for African American and rural-dwelling advanced cancer family caregivers.
Authors: Bechthold A.C. , Azuero A. , Pisu M. , Pierce J.Y. , Williams G.R. , Taylor R.A. , Wells R. , Curry K. , Reed R.D. , Harrell E.R. , et al. .
Source: Trials, 2022-06-02 00:00:00.0; 23(1), p. 452.
EPub date: 2022-06-02 00:00:00.0.
PMID: 35655285
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Engaging African American family Caregivers in Developing a Culturally-responsive Interview Guide: A Multiphase Process and Approach.
Authors: Gazaway S. , Bakitas M.A. , Elk R. , Eneanya N.D. , Dionne-Odom J.N. .
Source: Journal Of Pain And Symptom Management, 2022 06; 63(6), p. e705-e711.
EPub date: 2022-03-03 00:00:00.0.
PMID: 35247583
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An Early Palliative Care Telehealth Coaching Intervention to Enhance Advanced Cancer Family Caregivers' Decision Support Skills: The CASCADE Pilot Factorial Trial.
Authors: Dionne-Odom J.N. , Wells R.D. , Guastaferro K. , Azuero A. , Hendricks B.A. , Currie E.R. , Bechthold A. , Dosse C. , Taylor R. , Reed R.D. , et al. .
Source: Journal Of Pain And Symptom Management, 2022 01; 63(1), p. 11-22.
EPub date: 2021-07-31 00:00:00.0.
PMID: 34343621
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Exploring Culturally Responsive Religious and Spirituality Health Care Communications among African Americans with Advanced Heart Failure, Their Family Caregivers, and Clinicians.
Authors: Ejem D. , Steinhauser K. , Dionne-Odom J.N. , Wells R. , Durant R.W. , Clay O.J. , Bakitas M. .
Source: Journal Of Palliative Medicine, 2021 12; 24(12), p. 1798-1806.
EPub date: 2021-06-28 00:00:00.0.
PMID: 34182804
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Applying the Multiphase Optimization Strategy for the Development of Optimized Interventions in Palliative Care.
Authors: Wells R.D. , Guastaferro K. , Azuero A. , Rini C. , Hendricks B.A. , Dosse C. , Taylor R. , Williams G.R. , Engler S. , Smith C. , et al. .
Source: Journal Of Pain And Symptom Management, 2021 Jul; 62(1), p. 174-182.
EPub date: 2020-11-28 00:00:00.0.
PMID: 33253787
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Implementing a Clinic-Based Telehealth Support Service (FamilyStrong) for Family Caregivers of Individuals with Grade IV Brain Tumors.
Authors: Dionne-Odom J.N. , Williams G.R. , Warren P.P. , Tims S. , Huang C.S. , Taylor R.A. , Ledbetter L. , Lever T. , Mitchell K. , Thompson M. , et al. .
Source: Journal Of Palliative Medicine, 2021 03; 24(3), p. 347-353.
EPub date: 2020-07-24 00:00:00.0.
PMID: 32721254
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