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Informal Caregiver Burden among Survivors of Prolonged Mechanical Ventilation

Clinical Research, Investigation, and Systems Modeling of Acute Illness Laboratory, Department of Critical Care Medicine, Department of Biostatistics, Department of Health Policy and Management, Department of Psychiatry, and University Center for Social and Urban Research, University of Pittsburgh, Pittsburgh, Pennsylvania

Correspondence and requests for reprints should be addressed to Eric B. Milbrandt, M.D., M.P.H., F.C.C.P., CRISMA Laboratory, Department of Critical Care Medicine, University of Pittsburgh School of Medicine, 606D Scaife Hall, 3550 Terrace Street, Pittsburgh, PA 15261. E-mail: milbeb{at}ccm.upmc.edu

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.

Key Words: caregivers • depression • mechanical ventilation • outcomes research • quality of life

AT A GLANCE COMMENTARY Scientific Knowledge on the Subject Informal caregivers of intensive care unit survivors have significant burden, including increased risk for depression and post-traumatic stress disorder. It is not known, however, whether this burden is new and whether it changes or persists over time. What This Study Adds to the Field Caregivers have an elevated and persistent risk of depression, disruption in lifestyle, and reduction in employment over a 12-month period after the onset of critical illness.

 

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