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Family Caregivers Need Our Help—And Now It's the Law

Kennedy, Maureen Shawn MA, RN, FAAN

AJN The American Journal of Nursing: December 2017 - Volume 117 - Issue 12 - p 7
doi: 10.1097/01.NAJ.0000527462.77975.e4
Editorial

The CARE Act mandates preparation and teaching prior to hospital discharge.

AJN Editor-in-Chief E-mail: shawn.kennedy@wolterskluwer.com

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If you're a regular AJN reader, you're probably familiar with our initiatives over the years aimed at supporting family caregivers. (Our caregiver resources are now grouped into a collection, Resources to Support Family Caregivers, which you can access at http://links.lww.com/AJN/A81.)

In 2008, we participated in an interdisciplinary state of the science meeting to determine the needs of family caregivers and how nurses and social workers could help meet those needs. During the meeting, the complexities and difficulties of caregiving became all too clear and nursing's failure to adequately prepare and support caregivers all too apparent. (For a poignant account, read Carol Levine's essay on her caregiving experiences in the September 2008 special report: http://links.lww.com/AJN/A88.)

This project jump-started our ongoing work with the AARP Public Policy Institute on family caregiving. I recall listening to focus groups of caregivers, in which a common theme was that nurses didn't seem to have time to teach caregivers how to do certain tasks or to answer questions about posthospital care. The caregivers’ stories of trying—and often failing—to find someone to show them what to do were often heartbreaking, and they voiced how unprepared, anxious, and stressed they felt. As a nurse, I was disheartened and embarrassed by our failings. Why weren't there more evidence-based resources for these caregivers, and why didn't nurses have time for discharge planning or patient and family teaching?

In 2011, we developed a series of articles and videos to educate nurses on how to best assess the needs of family caregivers. Then, in 2012, AARP and the United Hospital Fund published the landmark report Home Alone: Family Caregivers Providing Complex Chronic Care, which documented that family members were not just assisting with dressing, bathing, and eating, but were managing complex “medical/nursing” tasks such as wound care and tube feedings, and giving medications and injections. And again, many reported receiving little or no training. As noted in the November 2016 AJN by Susan C. Reinhard, senior vice president and director of the AARP Public Policy Institute, and Heather M. Young, dean and professor in the Betty Irene Moore School of Nursing at the University of California, these are “the same tasks that made us tremble the first time we performed them as new nurses.”

The report spurred a groundswell of awareness of and support for unpaid family caregivers. AARP led a legislative effort that resulted in the Caregiver Advise, Record, Enable (CARE) Act, which mandates that hospitals identify, coordinate discharge with, and provide care instructions to the person who will provide care at home for a patient upon hospital discharge. The CARE Act is now law in 39 states.

In 2016, working again with AARP and other partners as part of AARP's Home Alone Alliance initiative, AJN launched a series of articles and videos to help nurses provide caregivers with the tools they need to administer their family member's medications, from eye drops to injections. The articles review the evidence for the practices nurses should reinforce with caregivers, and are accompanied by videos, produced by AARP and partners, that provide detailed step-by-step instructions for caregivers. And now, starting with this issue, we are launching a new series of articles and videos. These are designed to help nurses prepare caregivers to safely assist with mobility and to prevent falls or manage them if they occur; they will be followed by a series on skin and wound care. Each article includes a tip sheet that nurses can tear out and give to caregivers. The tips review key points and include links to instructional videos, which are available to caregivers on AARP's Home Alone Alliance site in both English and Spanish and can also be accessed on AJN’s website.

Over 40 million adults provide care to a family member, and that number will only grow as the number of people living with chronic conditions increases. We hope these articles and videos help hospitals and nurses meet their obligations to family caregivers.

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