Palliative care and end of life: the caregiver

Informal caregivers are a key component of end-of-life/palliative care and are increasingly recognized as recipients of care. Numerous factors affect the care they give and they have significant care needs themselves. The purpose of this survey was to identify key research questions, priorities, and next steps for research on caregivers and palliative care. A literature search of publications between 2006 and 2011 was conducted, yielding 109 studies that were evaluated on type, quality, topic, and other factors. An interdisciplinary group of healthcare professionals examined results and recommended research priorities. Existing research is primarily descriptive in nature, with few interventions to guide practice. Future research priorities include factors influencing caregivers and roles, information and support needs, caregiver health, end-of-life issues, healthcare disparities, and delivery and costs of care. Conclusions include that expanding the science will contribute to improving caregiver performance and health.