Dec 222011

by  Carol Levine

Carol Levine is director of the United Hospital Fund’s Families and Health Care Project, which coordinates the Next Step in Care campaign.

Family caregivers often say that they feel invisible in hospitals and other health care settings. I know what they mean from my own 17 years’ experience caring for my late husband. Even now, when I speak at a program on transitional care, I am usually the only one who talks about family caregivers’ critical roles and responsibilities.  This situation is changing but very slowly.  Transition protocols now sometimes mention the caregiver but only as the add-on to “patient,” as in “patient/caregiver.”

This modern chimera is as fantastical as the fire-breathing lioness/goat/snake of the Iliad. In reality the patient and caregiver are not mirror images of each other. Failing to acknowledge caregivers’ individual limitations and needs for information, training, and support is as misguided as ignoring their intimate knowledge of their ill family member or friend.

For 15 years the United Hospital Fund has been working to change provider practice and give caregivers accurate, pertinent, and accessible information to help them become true partners in care.

The Fund’s Next Step in Care campaign has three main components:

  • A website (, with 23 free downloadable guides for family caregivers available in English, Spanish, Chinese, and Russian. Other guides for health care providers help them work more effectively with family caregivers.
  • Outreach to community-based organizations to train staff to be able to use the Next Step in Care guides in their interactions with family caregivers.
  • The Transitions in Care-Quality Improvement Collaborative, now in its second round, which brings together teams from New York City hospitals, nursing home rehab programs, home care agencies, and hospices to work on processes that involve family caregivers in transition care planning and implementation.

The Next Step in Care guides are organized around four main categories:  (1) information for all caregivers, (2) hospital stays (including discharge planning), (3) rehabilitation services, and (4) home care. In the first category are guides, for example, on becoming a family caregiver, HIPAA and privacy regulations, emergency room visits, and hospice and palliative care, as well as a medication management guide and form.  In the hospital stay category are a guide to help caregivers do a self-assessment of needs and concerns, a guide to discharge planning options, and a discharge checklist.  The rehab and home care sections include guides that introduce these services and tell the caregiver about likely roles and responsibilities, as well as financial aspects.

These resources can be used in conjunction with or independent of any formal transition program.  They provide a basis for identifying and acknowledging family caregivers as the missing link between hospitals or rehab programs and community services.

Key words:  family caregivers, care transitions, toolkits, quality improvement, caregiver information, caregiver support

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