Grant Number:	4R37CA252868-06 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:	2025

Each year in the United States, more than 600,000 individuals die from cancer, with most receiving intensive support in their final months from family and friend caregivers (FCGs). Historically under-resourced FCGs are especially likely to experience high-intensity caregiving with fewer supports and resources. This context has been linked to worse outcomes for both patients and caregivers at the end of life (EOL), including elevated distress, poor quality of life (QOL), and increased healthcare utilization. After the patient’s death, bereaved caregivers from these populations are also more vulnerable to prolonged psychological and emotional challenges. Despite their critical role, few interventions have been tested to determine whether early palliative care (PC) can improve long-term outcomes for historically under-resourced FCGs and their care recipients. This project seeks to address that gap by extending follow-up and outcome evaluation in an ongoing randomized hybrid type I effectiveness-implementation trial of ENABLE Cornerstone, a lay navigator-led early PC intervention tailored to the needs of historically under-resourced FCGs of patients with newly diagnosed advanced cancer. Rooted in Pearlin’s Stress-Health Process Model, the intervention includes six structured sessions plus monthly follow-up from diagnosis through early bereavement. Lay navigators provide support in stress management, coping, help-seeking, caregiving skills, and decision-making. The proposed study will leverage an ongoing trial and focus on longitudinal caregiver and patient outcomes through the EOL period and 24 weeks post-patient death. Specifically, Aim 1 will test whether Cornerstone improves caregiver distress, QOL, and burden in the 24 weeks prior to death. Aim 2 evaluates effects on patient distress, QOL, quality of death and dying, and EOL healthcare utilization. Aim 3 assesses bereavement outcomes for caregivers, including distress, resilience, burden, grief, and QOL up to 24 weeks post-loss. This work is directly responsive to calls for research on interventions to support adult cancer caregivers. It also addresses critical gaps identified by the National Cancer Institute, the National Institute of Nursing Research, and the National Academies, including the lack of attention to under-resourced populations and insufficient evidence of long-term impacts. If successful, this highly scalable intervention could meaningfully improve caregiver and patient outcomes during the most critical stages of the cancer journey, while informing future dissemination and policy efforts aimed at optimizing EOL care and bereavement.




Cultural Values Influence on Rural Family Caregivers' Decision-Making for Ill Older Adult Loved Ones.
Authors: Gazaway S. , Odom J.N. , Herbey I. , Armstrong M. , Underwood F. , Heard T.V. , Allen A. , Ekelem C. , Bakitas M.A. , Elk R. .
Source: Journal Of Pain And Symptom Management, 2024 Jul; 68(1), p. 86-95.
EPub date: 2024-04-18 00:00:00.0.
PMID: 38641135
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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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