Research Priorities in Geriatric Palliative Care: Informal Caregiving
Published in Volume: 16 Issue 9: September 16, 2013
Online Ahead of Print: July 24, 2013
Online Ahead of Print: July 24, 2013
Author information
Richard Schulz, PhD
Department of Psychiatry, University of Pittsburgh, Pittsburgh, Pennsylvania.
Accepted April 1, 2013
ABSTRACT
Background:
Informal care provided by family members is an essential feature of
health care systems worldwide. Although caregiving often begins early in
the disease process, over time informal caregivers must deal with
chronic, debilitating, and life-threatening illnesses. Despite thousands
of published studies on informal care, little is known about the
intersection of informal caregiving and formal palliative care.
Objective:
The goal of this review is to identify research priorities that would
enhance our understanding of the relationship between informal
caregiving and palliative care.
Design: To better
understand palliative care in the context of caregiving, we provide an
overview of the nature of a caregiving career from inception to care
recipient placement and death and the associated tasks, challenges, and
health effects at each stage of a caregiving career. This in turn leads
to key unanswered questions designed to advance research in caregiving
and palliative care.
Results: Little is known about
the extent to which and how palliative care uniquely affects the
caregiving experience. This suggests a need for more fine-grained
prospective studies that attempt to clearly delineate the experience of
caregivers during palliative and end-of-life phases, characterize the
transitions into and out of these phases from both informal and formal
caregiver perspectives, identify caregiver needs at each phase, and
identify effects on key caregiver and patient outcomes.
Conclusions:
Inasmuch as most caregivers must deal with chronic, debilitating, and
often life-threatening conditions, it is essential that we advance a
research agenda that addresses the interplay between informal care and
formal palliative care.
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