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Cited by 12Palliative Care and End-of-Life IssuesPalliative and Oncologic CareNursing care and research

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

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Bechthold, Avery C., Azuero, Andres, Pisu, Maria, Pierce, Jennifer Young, Williams, Grant R., Taylor, Richard A., Wells, Rachel, Curry, Kayleigh +8 more·2022·Trials
DOI 10.1186/s13063-022-06305-wPMC PMC9161197
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Abstract

Background: Family caregivers play a vital, yet stressful role in managing the healthcare needs and optimizing the quality of life of patients with advanced cancer, from the time they are newly diagnosed until end of life. While early telehealth palliative care has been found to effectively support family caregivers, little work has focused on historically under-resourced populations, particularly African American and rural-dwelling individuals. To address this need, we developed and are currently testing Project ENABLE (E ducate, N urture, A dvise, B efore L ife E nds) Cornerstone, a lay navigator-led, early palliative care coaching intervention for family caregivers of African American and rural-dwelling patients with newly diagnosed advanced cancer. Methods: This is a 2-site, single-blind, hybrid type I implementation-effectiveness trial of the Cornerstone intervention versus usual care. Cornerstone is a multicomponent intervention based on Pearlin’s Stress-Health Process Model where African American and/or rural-dwelling family caregivers of patients with newly diagnosed advanced cancer (target sample size = 294 dyads) are paired with a lay navigator coach and receive a series of six, brief 20–60-min telehealth sessions focused on stress management and coping, caregiving skills, getting help, self-care, and preparing for the future/advance care planning. Subsequent to core sessions, caregivers receive monthly follow-up indefinitely until the patient’s death. Caregiver and patient outcomes are collected at baseline and every 12 weeks until the patient’s death (primary outcome: caregiver distress at 24 weeks; secondary outcomes: caregiver: quality of life and burden; patient: distress, quality of life, and healthcare utilization). Implementation costs and the intervention cost effectiveness are also being evaluated. Discussion: Should this intervention demonstrate efficacy, it would yield an implementation-ready model of early palliative care support for under-resourced family caregivers. A key design principle that has centrally informed the Cornerstone intervention is that every caregiving situation is unique and each caregiver faces distinct challenges that cannot be addressed using a one-size-fits all approach. Hence, Cornerstone employs culturally savvy lay navigator coaches who are trained to establish a strong, therapeutic alliance with participants and tailor their coaching to a diverse range of individual circumstances. Trial registration: ClinicalTrials.gov NCT04318886. Registered on 20 March, 2020.

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  • Barriers such as geographic isolation, socioeconomic disadvantage, limited broadband access, and systemic inequities in access to palliative and psychosocial care can contribute to unmet needs for information, skills training, and emotional support.

    “Barriers such as geographic isolation, socioeconomic disadvantage, limited broadband access, and systemic inequities in access to palliative and psychosocial care can contribute to unmet needs for information, skills training, and emotional support.6,7,8,9,10”

    From Palliative Care Coaching for Family Caregivers of Patients With Advanced Cancer (2026) · cites this paper as [10]

    The Background (page not available) says African American and rural-dwelling advanced-cancer family caregivers are often under-resourced, have poor access to formal support services, and receive no formal training. This supports the broad point about unmet support and training needs, but our copy does not identify limited broadband access or specifically establish the claimed links from socioeconomic disadvantage and systemic inequities in palliative and psychosocial care to those needs. (LLM, conf=0.85)

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  • African American and rural caregivers have historically had limited access to formal resources and supportive services.

    “In addition, African American and rural caregivers have historically had limited access to formal resources and supportive services.”

    From Palliative Care Coaching for Family Caregivers of Patients With Advanced Cancer (2026) · cites this paper as [10]

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Cited by

Sorted by citations

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., Gazaway, S., Mollman, S., Engler, S., Puga, F., Bakitas, M. A., & Dionne-Odom, J. N.
Affiliations
  • University of Alabama at Birmingham (US)
  • USA Mitchell Cancer Institute (US)
  • University of Alabama (US)
  • South Dakota State University (US)
Corresponding author
Dionne-Odom, J. Nicholas
ORCID
Venue
Trials
Publisher
Springer Science and Business Media LLC
Published
2022-06-02
Volume
23
Issue
1
Pages
452-452
ISSN
1745-6215 (ISSN-L)
DOI
10.1186/s13063-022-06305-w
PMC
PMC9161197
OpenAlex
W4281693821
Cited by
12
References
12
Citations by year
2026: 5 · 2025: 1 · 2024: 4 · 2023: 2
FWCI
1.55
Type
journal article
Language
en
Open access
Licence
Locations
  • Trials (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders
National Cancer Institute (R37CA252868)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
Keywords
family caregivers, advanced cancer, early palliative care, telemedicine, African American caregivers, rural caregivers, caregiver distress, advance care planning, stress management, culturally tailored interventions, cost-effectiveness
MeSH terms
Mentoring, Black or African American, Humans, Neoplasms, Palliative Care, Quality of Life, Randomized Controlled Trials as Topic, Single-Blind Method, Caregivers

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