The work providing the foundation for Next Step in Care dates back to 1996, when the United Hospital Fund first formally recognized the importance of the family caregiver as a member of the health care team [see Chronology].
In 2006 the Fund created a national working group and charged it with developing a strategy for a major initiative to help family caregivers. The working group’s consensus was to identify a strategy to enable health care providers and family caregivers to plan safe and smooth transitions. That consensus was based on both the understanding of the critical need for change and the practical consideration that transitions had become a major focus of medical attention. The working group also developed the “Seven Cs”— communication, cultural competence, consideration, courtesy, collaboration, coordination, and continuity—values that should be the foundation of health care providers’ interactions with family caregivers and the people they care for.
With a focus on hospitals, rehab units in nursing homes, and home care agencies, the United Hospital Fund reviewed more than 150 transition protocols, finding that only a few mentioned family caregivers specifically. An expert panel was created to review existing materials for family caregivers and identify gaps and needs and to consult on other issues. Expert panel members included:
Steven Albert, PhD, MSPH
University of Pittsburgh
Graduate School of Public Health
Eric Coleman, MD, MPH
University of Colorado
School of Medicine
Myra Glajchen, DSW
Beth Israel Pain and
Mary Naylor, RN, PhD
University of Pennsylvania
School of Nursing
Helen Osborne MEd, OTR/L
Health Literacy Expert
New York Policy Director
PHI (formerly, the Paraprofessional Healthcare Institute)
Ann Wyatt, MSW
Nursing home consultant
To further inform the process, participating hospitals, rehab units in nursing homes, and home care agencies in New York City conducted self-assessment surveys focusing on current practices and protocols involving family caregivers. Using this information, United Hospital Fund staff and consultants created the first in a series of guides and checklists for family caregivers, designed to inform them about what to expect, how to work better with health care providers, and how to plan safe and smooth transitions. The materials were reviewed by a health literacy expert and pilot-tested at 10 New York City hospitals, nursing homes, and home care agencies. Additional materials were created for health care providers to help them work more effectively with family caregivers.
A website to house the guides was launched in 2009, and the first guides went online in English and Spanish. Chinese and Russian versions were added in 2010. Since then additional guides have been added, and older guides revised and updated to take account of regulatory and other changes. All the guides are free and downloadable. There are now Web-enabled versions of most of the materials that make it easier to access them using mobile devices.
Next Step in Care differs from other efforts to improve transitions because it:
• Provides tools that address the most common concerns of both providers and family caregivers,
• Focuses on the role of family caregivers, and
• Stimulates change across health care sectors: hospitals, rehabilitation units in nursing homes, and home care.
United Hospital Fund Family Caregiving Chronology