study from 2017 defined caregiver burden as, “the strain or load borne by a person who cares for a chronically ill, disabled, or elderly family member.” Nurses are all too familiar with the instinctive concern for patients, and often equally so for the person sitting at the patient’s side. Many caregivers give up proper sleep, nutrition, recreation, and financial resources to care for a family member with a disease that requires comprehensive, and often constant, care. Many caregivers work in addition to caring for their loved ones and have personal and family commitments of their own. The caregiver burden begins when the caregiver sees that something has got to give, and the first thing to go is their own well-being.

Because the nurse is responsible for patient care, it may seem like it’s outside a nurse’s scope to address issues with caregivers. In fact, nurses are equipped to empower patient family members to lighten the burden of caring for sick family. This can be done by nurse researchers who can expand on current awareness, and by direct-care nurses who participate in caregiving with family.

Research

In recent years, research has demonstrated the very real physical consequences of caregiver burden. Studies show that caregivers literally age faster. Research is growing in this area and with that, resources are expanding. The devastating effects of caregiver burden reach beyond temporary distress and eventually create an emotional and physical strain on the caregiver. Too often, the caregiver becomes a patient.

Nurse researchers can contribute to the solution by researching and publishing on this topic, empowering family members to take care of themselves, and urging health care professionals to create health care systems and policies that patients and families can trust.

Nurse as Caregiver Support

Nurses can introduce family caregivers to resources that alleviate the stress of being a caregiver. Social services can step in and address insurance, facility transfer, and patient service allocation. Nurses can also encourage family members to leave the bedside and sleep in their own bed, get a coffee or a hot meal, or encourage them to go for a walk and offering to call if anything urgent comes up.

Many caregivers insist on performing nursing tasks, such as bathing, toileting, and positioning, so they can be assured it is done “right.” Perhaps they have had experiences that have weakened their trust in nurses and other providers. Nurses can gain this trust back by offering to perform tasks in front of, or in conjunction with, caregivers, and eventually, give the caregiver the comfort to step away. Lastly, nurses can give caregivers information about support groups which may act as a pressure release valve and allow caregivers to share their experience and concern, and connect to others going through similar circumstances.

Nurse as Caregiver

Any discussion of caregivers is incomplete without acknowledging the possibility of burnout in nurses themselves. The major difference between a nurse as caregiver and a family member is that boundaries of care between nurses and patients are finite. Nurses have a scope of practice that only encompasses a specific range of skills and tasks, and their work as caregivers ends when their shift does.

This assumes that nurses are not caring for their own family members, which many are. Furthermore, nurses are trained to augment their skill set with the practice of compassionate care and empathetic interactions with patients. Many nurses also work more than full time increasing the time they spend as professional caregivers.

Finding a Solution

The analogy of the oxygen mask on airplanes offers caregivers a guiding principle—put the oxygen mask on yourself first.  The yardstick of caregiver burden is misery. Caregiving from a state of personal deficit is not only ineffective but creates a situation where there is not only an ill patient, there is also a depleted and distressed family member. There is nothing wrong with being a caregiver unless it starts to take from the giver.

Nancy Swezey, BSN, RN, CNOR

Nancy Swezey received her BSN from Columbia University. She now practices in New York City in the operating room where she has worked as a staff nurse, and currently as a care coordinator specializing in head and neck surgery. Nancy is also pursuing her advanced practice degree at CUNY Hunter where she assists the faculty as a research assistant, focusing on nurse education and module development.

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