The Role of Caregivers in Supporting Patients Living with Chronic Illness
Andrea Wallace, PhD, RN, is an assistant professor at the University of Iowa College of Nursing and a Robert Wood Johnson Foundation Nurse Faculty Scholar.
Patients live in communities that offer support and include influences that are outside the walls of clinical settings. While this is not a new revelation, I have often had to remind myself and the students I teach that, as health care providers, we witness only a very small part of patients’ lives, generally at a time when they are most removed from their experience of daily living.
"I cringe to think of how many of my adult patients I’ve asked to adopt a complex medication schedule for their diabetes, all the while suspecting they may have limited literacy skills"
We must remain continually aware of patients’ personal and financial resources when planning care. But it was not until recently that I became incredibly taken with the idea that, for many patients living with chronic illness, it’s those who help patients care for themselves—the daughter picking up medications, the neighbor driving to appointments, the spouse doing shopping – who may make the difference between successfully and unsuccessfully coping with what can be incredibly complex self-management regimens.
As researchers, we have a long, established literature base from which to confirm our “hunch” that caregivers play an important role in the health outcomes of those living with chronic conditions. Pediatric care providers are constantly aware that they are treating entire families, not just children. Gerontology has also made great strides in supporting those caring for older adults.
However, as clinicians delivering care to otherwise independent adults, we have yet to apply what we know about the importance of informal (i.e., unpaid) social support toward improving the quality and outcomes of care. I cringe to think of how many of my adult patients I’ve asked to adopt a complex medication schedule for their diabetes, all the while suspecting they may have limited literacy skills—as do up to 40 percent of those seeking care in public hospital systems. If only I had a mechanism to officially identify and involve the person who is assisting that patient at home instead of leaving them in the waiting room, I might have made much more progress with improving their health outcomes.
I am not alone in this: Most care delivered in clinical settings remains firmly fixed on individual patients without considering others involved in their lives after they exit the clinic door.
There are likely many reasons for not considering the wide array of people involved in patients’ lives. These reasons include the limited time we have with patients, privacy laws, and a culture of risk aversion.
However, we may be closing out our greatest allies in promoting good health—those who are closest to patients. As nurses we are well-suited to consider the role others’ play in the health of our patients, and to discover means to best integrate them in our efforts to improve the lives of those living with chronic illness.