Family Caregiving

Focus Areas: Quality and Efficiency, Clinical-Community Partnerships

Family Caregiving

Focus Areas: Quality and Efficiency, Clinical-Community Partnerships

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. 

 
Family Caregiving
    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
    Family Caregiving Team

    Carol Levine directs the United Hospital Fund's Families and Health Care Project, which focuses on developing partnerships between health care professionals and family caregivers, especially during transitions in health care settings (www.nextstepincare.org).  Before joining the Fund in 1996, she directed the Citizens Commission on AIDS in New York City from 1987 to 1991, and The Orphan Project, which she founded, from1991 to 1996.  As a senior staff associate of The Hastings Center, she edited the Hastings Center Report.

    Ms. Levine is the editor of Always on Call: When Illness Turns Families into Caregivers (2nd ed., Vanderbilt University Press, 2004); co-editor,  with Thomas H. Murray, of The Cultures of Caregiving: Conflict and Common Ground Among Families, Health Professionals and Policy Makers (Johns Hopkins University Press, 2004); and editor of Living in the Land of Limbo: Fiction and Poetry about Family Caregiving (Vanderbilt University Press, 2014).

    In 1993, Ms. Levine was awarded a MacArthur Foundation Fellowship for her work in AIDS policy and ethics.  She was named a WebMD Health Hero in 2007.

    In 2009, Ms.Levine was named a Purpose Prize fellow, an honor for social entrepreneurs over 60 who are using their experience and passion to take on society’s biggest challenges.

    In 2016, Ms. Levine was named one of the Top 50 "2016 Influencers in Aging" by Next Avenue, a digital publication dedicated to covering issues for people 50 and older.

    Kristina Ramos-Callan
    Kristina Ramos-Callan