Research priorities in geriatric palliative care: informal caregiving

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.

FIG. 1.

Care task demands, health effects and interventions, along care trajectory. Entries based on research evidence. ADL, activites of daily living such as bathing, dressing, toileting; CG, caregiver; IADL, instrumental activities of daily living such as cooking, cleaning, shopping.