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Family Caregivers Are Members of Our Team

Reinhard, Susan C. PhD, RN, FAAN; Young, Heather M. PhD, RN, FAAN

AJN, American Journal of Nursing: November 2019 - Volume 119 - Issue 11 - p 7
doi: 10.1097/01.NAJ.0000605268.94446.a5
Guest Editorial
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Nurses play a critical role in providing support.

Susan C. Reinhard is senior vice president and director of the AARP Public Policy Institute and chief strategist at the Center to Champion Nursing in America in Washington, DC. Heather M. Young is associate vice chancellor for nursing, dean, and professor in the Betty Irene Moore School of Nursing at the University of California, Davis, in Sacramento. Contact author: Susan C. Reinhard, sreinhard@aarp.org.

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Three years ago, we launched our partnership with AJN when we introduced the Supporting Family Caregivers: No Longer Home Alone series of articles. This series was inspired by the findings of AARP's Home Alone: Family Caregivers Providing Complex Chronic Care study, which recognized for the first time the extent to which family caregivers perform medical nursing tasks and their expressed need for greater preparation for this role. Much has transpired over the last few years, and we are pleased to provide an update on our progress in creating awareness and developing resources for nurses to use as they support family caregivers.

The gap between the expectation that family caregivers will perform complex health care tasks and the preparation they receive to manage those tasks sparked national interest and policy change. AARP provided leadership and model legislation for an effort to enact the Caregiver Advise, Record, Enable (CARE) Act in 43 states. The legislation requires hospitals to advise individuals that they can identify a family caregiver, record the name and contact information of the caregiver in the electronic health record, and enable family caregivers to prepare for their postdischarge obligations by providing instruction and adequate notice. Hospitals across the United States have been responding by making creative changes in their resources and processes to support family caregivers. Nurses are playing a vital role by engaging, instructing, and supporting family caregivers throughout the hospital stay and after discharge.

The AARP Public Policy Institute's No Longer Home Alone initiative has provided vital resources for nurses and family caregivers, including more than 30 videos (14 in Spanish) and more than a dozen articles in AJN, covering the topics of medication management, mobility, wound care, incontinence, and special diets. Written resource guides for family caregivers augment the videos and are available at www.aarp.org/nolongeralone. Additional videos addressing durable medical equipment, medication management, and understanding a hospital stay are in production.

In April, we released the Home Alone Revisited report, which provides additional insights into family caregivers and their vital role. The report revealed that family caregivers today are diverse in race, ethnicity, and age, with millennials constituting about a quarter of caregivers. It affirmed that caregivers are engaged in care that is both intense and complex, with more than 20 million performing medical–nursing tasks. We found that family caregivers worry about making a mistake, and while about 60% report receiving instruction in performing new medical–nursing tasks, they often feel they are on their own in executing them.

Pain management is an important issue for more than 70% of family caregivers, who are challenged to relieve suffering and worry about giving too much or too little medication. The report also revealed that some caregivers—particularly multicultural caregivers and those who are socially isolated or feel they have no choice in caregiving—are at greater risk for strain than others.

These findings highlight the critical role that nurses play in assessing family caregiver needs, readiness, and preparedness; giving instruction; and providing support.

As the border between hospital and home blurs, and more care is shifting to community settings, family caregivers are paying the price. As nurses, we must shift our focus and perspective to embrace this new reality and be more inclusive and supportive of family caregivers as vital members of our teams. This means making a change in our roles and our actions. It means a shift in emphasis for health care systems as they develop structures and processes to enable nurses to provide this required support. And it means changes in public policies and funding to ensure equity and social justice for the diverse caregivers across our nation.

As we recognize family caregivers during the month of November, please join us in raising awareness about these issues and in thanking the families you encounter in your daily practice for the tremendous contributions they make.

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