Authors

  1. Bindon, Susan L. DNP, RN-BC, CNE

Article Content

November is National Family Caregivers Month. To mark the designation, we want to acknowledge the families and friends who care for loved ones at home, with or without professional healthcare partners. Focus groups conducted by AARP related to their Home Alone survey and report (Reinhard, Levine, & Samis, 2012) indicated that there is an opportunity for nurses to do more when preparing families to care for loved ones at home. The survey found that nearly half (46 percent) of family-based caregivers perform complex care tasks. These activities go beyond those considered as activities of daily living or ADLs, such as meal preparation, bathing, dressing, or household chores. Caregivers in the home are sometimes responsible for medication administration, wound care and management, glucose checks, and use of various monitors and other special equipment.

 

As large numbers of unpaid family caregivers in the United States provide countless hours of complex care, sometimes around the clock and with minimal training. Nurses should be aware of how to support family caregivers with information and other resources.

 

On the heels of the Home Alone report, which resonated with some policymakers and special interest groups, the Caregiver Advise, Record and Enable (CARE) Act was created. Enacted by 39 U.S. states and territories as of July 2017 and under the legislative process in several others, the CARE Act mandates recognition and education prior to hospital discharge of the care recipient. Though some differences may exist across states, three main areas are targeted under the CARE Act. First, caregivers need to be identified and involved with the patient's plans and progress throughout the hospital stay. Caregivers should be notified of potential discharge plans in time for them to adequately prepare for their new role and responsibilities. This may include time to purchase or obtain needed supplies and to arrange work, transportation, child care, and other plans so they can be as ready as possible. Third, caregivers need clear instruction and, in some cases, practice with the skills they will need to perform.

 

While the primary focus of nursing professional development (NPD) practitioners in acute care settings may not be on home care or caregivers; it is safe to assume that they or someone they know has cared for a loved one at home. Whether caring for a premature infant discharged home after several long and anxious weeks, a partner following a traumatic injury, or a senior facing the late stages of a chronic or terminal disease, the responsibilities, exhaustion, and isolation of doing so can be overwhelming. NPD practitioners can arm themselves with information about the CARE Act and how it applies in their state(s). They can help ensure that direct care nurses address the critical elements of care via patient education and discharge instructions. They can lobby to include this vital information in unit orientation and find effective ways to educate staff via simulations, experiential learning activities, or other strategies. They can share the critical need to prepare families for the days ahead. In short, they can make a meaningful difference in a family caregiver's transition to their new role.

 

During this holiday season and every day, our hats are off to the unsung heroes who serve as family caregivers and to the nurses and nurse educators who prepare them to do so. Please see these useful links related to Home Alone and the CARE Act:

 

1. AARP's Home Alone site: http://www.aarp.org/home-family/caregiving/info-10-2012/home-alone-family-caregi

 

2. The full report of the survey on complex care given by family caregivers: http://www.aarp.org/content/dam/aarp/research/public_policy_institute/health/hom

 

3. An explanation of the CARE Act prompted by the Home Alone report: http://www.aarp.org/content/dam/aarp/ppi/2017/08/from-home-alone-to-the-care-act

 

 

AJN has a free series of articles for nurses and instructional videos for caregivers. http://journals.lww.com/ajnonline/pages/collectiondetails.aspx?TopicalCollection

 

Other instructional videos for family caregivers are available free on the AARP site: http://www.aarp.org/ppi/info-2017/home-alone-alliance.html

 

Reference

 

Reinhard S. C., Levine C., Samis S. (2012). Home alone: Family caregivers providing complex chronic care. AARP and United Hospital Fund. [Context Link]