||1R37CA252868-01 Interpret this number
||University Of Alabama At Birmingham
||Lay Coach-Led Early Palliative Care for Underserved Advanced Cancer Caregivers
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.
Applying the Multiphase Optimization Strategy for the Development of Optimized Interventions in Palliative Care.
, Guastaferro K.
, Azuero A.
, Rini C.
, Hendricks B.A.
, Dosse C.
, Taylor R.
, Williams G.R.
, Engler S.
, Smith C.
, et al.
Journal of pain and symptom management, 2021 07; 62(1), p. 174-182.
Implementing a Clinic-Based Telehealth Support Service (FamilyStrong) for Family Caregivers of Individuals with Grade IV Brain Tumors.
, Williams G.R.
, Warren P.P.
, Tims S.
, Huang C.S.
, Taylor R.A.
, Ledbetter L.
, Lever T.
, Mitchell K.
, Thompson M.
, et al.
Journal of palliative medicine, 2021 03; 24(3), p. 347-353.