Family Caregiving

 
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In the United States, there are approximately 42 million family caregivers—unpaid relatives and close friends who provide essential care to adults with chronic or terminal illness or serious mental or physical disabilities.

Through innovative research and analysis, broad dissemination of findings, and targeted grantmaking to stimulate systemic change, the United Hospital Fund works to advance public and professional understanding of the crucial role of family caregivers in the health care system.

The Fund stimulates the development of sound policies and programs that support family caregivers' needs for information, education, training, and emotional support. While New York is the focus of this work, its impact and relevance are national.

Contact: Carol Levine

Next Step in Care: Family Caregivers and Health Care Professionals Working Together

Next Step in Care is a multiyear, multidimensional campaign to change practice so that family caregivers are routinely involved in planning, decision making, and coordinating care, particularly around transitions in care settings (i.e., when patients move from one care setting to another, such as from hospital to rehabilitation or home).  While transitions are key points at which patient safety and care coordination are at risk, most efforts to address associated problems have focused on provider-to-provider communications, essentially excluding family caregivers from the solution.

Family caregivers often assume tremendous responsibility for care following transitions, but are seldom integrated into the transition process.  This is where Next Step in Care makes a difference.  The Next Step in Care website makes available to family caregivers and health care providers 25 field-tested guides and checklists—in English, Spanish, Chinese, and Russian—that are simple, accurate, and task-oriented.  Topics covered include medication management, assessing one's needs as a caregiver, planning for discharge, HIPAA, and hospice and palliative care.

Next Step in Care efforts include outreach to organizations that directly serve family caregivers, and Transitions in Care-Quality Improvement Collaborative, or TC-QuIC, a multi-provider initiative working to find optimal ways to integrate the Next Step in Care guides and checklists into routine care.

Funds to support the development of the Next Step in Care campaign were provided by The Altman Foundation, The Jacob and Valeria Langeloth Foundation, Eisenberg Family Trust, TD Bank, Aetna Foundation, The New York Community Trust, and The Margaret A. Cargill Foundation, as well as the United Hospital Fund.

Highlights from the Fund's Past Work on Family Caregiving

Next Step in Care is a result of years of United Hospital Fund work. See a timeline of the Fund's work on family caregiving.