Through innovative research and analysis, broad dissemination of findings, and collaboration with health care and social service providers, United Hospital Fund works to advance public and professional understanding of the crucial role family caregivers play in the health care system, and stimulate systemic change, and provide caregivers with the support and resources they need. UHF also helps to develop policies and programs that support family caregivers’ needs for information, education, training, and inclusion in the patient’s health care team. While New York is the focus of much of this work, its impact and relevance are national.
Our Action Plan
UHF conducts original and unique research into the issues facing family caregivers and patients to better understand and address their issues and struggles. Reports and surveys have been compiled on patients who refuse home health care services, family caregiver perspectives on medication management and wound care, family caregivers who provide complex chronic care to people with particularly demanding cognitive and behavioral health conditions, the wide range of medical and nursing tasks performed by spousal caregivers, and the results of a national survey of 1,677 family caregivers.
The day a patient is discharged from the hospital is too often a “hurry up and wait” experience that can be confusing and frustrating. Patients and their family members have a lot of information thrust upon them, with little support as they struggle with decisions about various logistics—transportation home, preparing the home for convalescing patients, dealing with changes in medications, making a follow-up appointment. Patients and their caregivers often arrive home stressed and bewildered, and mistakes occur.
Over 30 states, including New York, have passed versions of the Caregiver Advise, Record, and Enable (CARE) Act to ease this transition by requiring hospitals to include family caregivers in discharge planning and give them post-discharge training. UHF has created a CARE Act guide for patients and their caregivers, and a toolkit for hospital personnel, designed to integrate the legislation’s requirements into daily practice.