There are approximately 43.5 million family caregivers in the United States—unpaid relatives and friends who provide essential care to adults with chronic or terminal illnesses, or serious mental or physical disabilities. Family caregivers are the backbone of at-home care, yet they too often have little or no support, training, or needed resources. 

Next Step in Care

Next Step in Care provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients. The downloadable guides, and checklists—in English, Spanish, Chinese, and Russian—are simple, accurate, and task-oriented. Topics covered include medication management, assessing one's needs as a caregiver, planning for discharge, patient privacy regulations, hospice and palliative care, and instructions for such common caregiving tasks as maintaining an intravenous line.

Next Step in Care

Our Goals

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

Caregiver Research

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.

Caregiver Support

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. 

"Everybody recognizes that discharge planning could be better. The implementation of the CARE Act in so many states across the nation, and our CARE Act guides and toolkits, will hopefully make this important care transition smoother for both patients and caregivers."
Carol Levine
Director, Families and Health Care Project, United Hospital Fund