Caregiver Wellbeing Clinical Trial
Official title:
Caregiver Outlook: An Evidence-based Intervention for the Chaplain Toolkit
This one-arm pilot study will evaluate the feasibility and acceptability of Caregiver
Outlook, a manualized chaplain-led intervention to improve the well-being of caregivers of
seriously ill patients.
Study Activities and Population Group:
The investigators anticipate enrolling 36 informal caregivers (adults) through DUMC providers
and/or self-referral. Potential subjects will be screened for study eligibility, consented if
eligible and interested, and one week later administered a baseline survey by phone. Next,
the chaplain-led intervention will be delivered by phone in three one-hour sessions, spanning
a one month window. After session 3, subjects will receive a check-in phone call to briefly
discuss their any additional thoughts, questions or concerns they may have. Sessions will be
audio recorded. After intervention completion, follow-up surveys will be administered by
phone at two points in time.
Data Analysis and Risk/Safety Issues:
This is a mixed-methods study involving qualitative thematic analysis and survey data,
collected from the adult caregiver subjects. There are no known physical risks to
participation, and the study team will work to ensure confidentiality and data
safety/integrity.
Tasks of preparation and completion - reviewing one's life, assessing unfinished business,
addressing relationship conflicts, offering or receiving forgiveness, and identifying wisdom
gained and future goals - are associated with quality in both palliative care and chaplaincy
care. The consequences are dramatic when preparation and completion at the very end of life
are not achieved, and unmet needs in these domains influence caregiver experience earlier and
throughout longer periods during the trajectory of serious illness.
Efforts to improve the caregiver experience have tended to focus on skill-building and
self-efficacy for providing care, including patient pain and symptom management, and
caregiver coping. However, less is known about effective ways to address other elements of
caregivers' experience that may influence well-being and capacity to care, namely the meaning
caregivers' ascribe to their caregiving role. Research shows caregivers with higher sense of
meaning report lower subjective caregiver burden. In palliative care, the important tasks of
caregiver preparation and completion are tools through which caregivers engage in
meaning-making, identifying purpose, and connecting with what is held sacred.
These tasks are central to patient and family definitions of quality at end-of-life, and the
goals and skills of healthcare chaplaincy. Addressing issues of meaning, exploring relational
well-being, and supporting caregiver's own sense of loss and hope is at the heart of
chaplaincy care. Professional chaplaincy uses narrative pastoral care to help patents,
families, significant others, and staff focus on meaning-making and quality of life in the
midst of health celebrations, changes, crises, and loss. Clinical chaplains focus on
caregiver's specific concerns, values, beliefs, and practices that enhance caring with
integrity and authenticity for the purpose of ongoing spiritual assessment and pastoral care
planning.
However, both the manner and extent to which caregiver concerns are addressed vary based on
family and patient circumstance, time available, and individual chaplain skill. The majority
of chaplain's approaches to these concerns have not been delivered or evaluated in a
manualized format. The chaplaincy profession's evidence base would be strengthened by
systematically exploring the content of such an approach, its impact on caregiver health
outcomes, and the ways a manualized intervention approach ("Caregiver Outlook") may serve as
a foundation for the chaplain's future teaching, practicing, and researching of systematized
spiritual assessment and care planning processes.
The investigators propose a one-arm pilot trial to evaluate the feasibility and acceptability
of a chaplain-led preparation and completion intervention, and also to examine effect sizes
on health outcomes. Results will permit feasibility and acceptability evaluation of an
evidence-based tool for addressing and assessing caregivers' spiritual strengths and
experiences of suffering in palliative care. The project will serve as a foundation to
understand integration of the central tasks of preparation and completion with other
approaches to spiritual assessment and pastoral care planning. Finally, results will provide
preliminary data for future large-scale randomized control trials of the intervention.
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| Status | Clinical Trial | Phase | |
|---|---|---|---|
| Recruiting |
NCT06094647 -
Altitudes for Caregivers
|
N/A |