Informal caregiver burden among survivors of prolonged mechanical ventilation

Abstract

Rationale: Although caregiver burden is well described in chronic illness, few studies have examined burden among caregivers of survivors of critical illness. In existing studies, it is unclear whether the observed burden is a consequence of critical illness or of preexisting patient illness.

Objectives: To describe 1-yr longitudinal outcomes for caregivers of patients who survived critical illness, and to compare depression risk between caregivers of patients with and without pre-intensive care unit (ICU) functional dependency.

Methods: Prospective, parallel, cohort study of survivors of prolonged (greater than 48 h) mechanical ventilation and their informal caregivers. Caregivers were divided into two cohorts on the basis of whether patients were functionally independent (n = 99, 59%), or dependent (n = 70, 41%) before admission. Functional dependency was defined as dependency in one or more activities of daily living or in three or more instrumental activities of daily living. Patient and caregiver outcomes were measured 2, 6, and 12 mo after mechanical ventilation initiation.

Measurements and main results: We studied three caregiver outcomes: depression risk, lifestyle disruption, and employment reduction. Most patients were male (59.8%), with a mean (SD) age of 56.6 (19.0) yr. Caregivers were mostly female (75.7%), with a mean (SD) age of 54.6 (14.7) yr. Prevalence of caregiver depression risk was high at all time points (33.9, 30.8, and 22.8%; p = 0.83) and did not vary by patient pre-ICU functional status. Lifestyle disruption and employment reduction were also common and persistent.

Conclusions: Depression symptoms, lifestyle disruption, and employment reduction were common among informal caregivers of critical illness survivors. Depression risk was high regardless of patient pre-ICU functional status.

Figure 1.

Patient and caregiver enrollment. ICU = intensive care unit; MV = mechanical ventilation; QOL-MV = quality of life after mechanical ventilation.

Figure 2.

Caregiver depression risk (top), activity restriction (middle), and employment reduction (bottom) stratified by pre-ICU patient functional status. These measures of burden were persistently elevated and tended to be higher in caregivers of patients with pre-ICU functional dependency, although this difference was significant only for 6-mo activity restriction. Dark-shaded bars, pre-ICU patient functional dependence; light-shaded bars, no pre-ICU patient functional dependency. CES-D = Center for Epidemiologic Studies Depression Scale.