Nov 10, 2020
There are about 53 million family and friends providing care and assistance to loved ones in the United States. Although family caregivers provide a significant portion of health and support services to individuals with serious illnesses, they are often overlooked by U.S. health care systems. Fundamental changes are needed in the way we identify, assess, and support family caregivers. Recent changes in the U.S. health care system and payment models have increased the opportunities to integrate family caregivers into care teams.
The authors reviewed the literature on the role of family caregivers in the coordination of care and conducted key informant interviews with 13 experts from diverse stakeholder groups to better understand the barriers to integrating family caregivers into the patient's health care team and identify ways to mitigate these barriers. The authors identify promising policy directions and provide recommendations for next steps in assessing, developing, and implementing policies to improve the integration of family caregivers into care teams.
Family caregivers have direct access to loved ones with caregiving needs. These regular interactions allow family caregivers to monitor health changes on a more-regular basis than would be possible for formal health care providers. Including family members in care collaboration improves patients' access to services and reduces patients' unmet needs. Despite these benefits, caregivers are often treated as secondary members of the care team. Although the role of family caregivers is gaining more recognition, integrating them as partners in the care team is not standard protocol currently.