When a Loved One Is in the ICU: The Symptom Burden of Family Caregivers

Betty R. Ferrell, PhD, RN


May 22, 2018

Caregivers Have Symptoms Too

There is a growing recognition of the emotional and physical burdens and distress of family caregivers of seriously ill patients. Symptom assessment is the standard of care for patients in critical care settings, yet the symptom burden of family caregivers is not often addressed.

Until now, most of the attention toward symptoms in caregivers has focused on the home environment, where family members become the 24-hour daily caregivers. A recent study[1] identified common symptoms experienced by these family caregivers, a necessary first step in alleviating some of this burden.

An assessment tool commonly used to assess patient symptoms, the Memorial Symptom Assessment Scale, was used to measure caregiver symptoms. The study also explored the severity of the reported symptoms as well as demographic characteristics associated with symptom burden.

The frequency of self-reported symptoms among caregivers was high—a median of nine symptoms (range, 0-24). Psychological rather than physical symptoms were at the top of the list. For example, "worrying" was identified by 91% of caregivers, followed by sadness (88%) and difficulty concentrating (74%). The most frequent physical symptoms were difficulty sleeping (71%), a lack of energy (60%), and a reduced appetite (55%).


The term "family-centered care" is often used in healthcare, but this study reminds us about how often we ignore the second-order patients known as family caregivers. This study is part of a growing body of literature which challenges us to expand our scope of care to those who may need it most.[2,3,4,5]

This study sheds new light on the experiences of these family caregivers through assessment of their symptoms. As the investigators acknowledge, millions of patients are admitted to intensive care units (ICUs) each year,[6] making this a common area of concern. Often, the critical care admission occurs with no warning, and families are suddenly thrust into the highly stressful situation of an ICU and the uncertain survival of their loved ones. As might be expected, many of the caregiver symptoms were psychological in nature, but physical symptoms were also prevalent. The findings also identify those family caregivers with the greatest symptom burden and distress: younger caregivers, spouses, and those with illnesses of their own to cope with.


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