Caregivers of the Chronically Critically Ill After Discharge From the Intensive Care Unit: Six Months’ Experience

It is estimated that 50 million people in the United States provide care for a chronically ill, disabled, or aged family member or friend.1 For caregivers of persons with cancer and dementia, extensive evidence shows that negative psychological and behavioral consequences are common and may be linked to a decline in caregivers’ overall health.2,3 Caregivers of critically ill patients also experience high levels of stress. Recovery from critical illness may occur quickly or gradually over an extended period. The term chronically critically ill (CCI) is commonly used to describe persons who require an extended duration of mechanical ventilation and hospitalization after recovery from critical illness.4 Evidence from a variety of sources suggests that growing numbers of caregivers will face the need to support CCI patients after hospital discharge. Demand for critical care, including mechanical ventilation, is anticipated to increase sharply as the generation of “baby boomers” grows to 20% of the total US population by 2030.5 Currently, 5% to 20% of patients in intensive care units (ICUs) require mechanical ventilation for periods that can extend to weeks or months,6 and those percentages are expected to increase.7,8 It has been estimated that by 2020 more than 600 000 patients per year will require extended critical care support.9 Such patients encounter enormous difficulties, including psychoemotional stress, reduced physical and neurocognitive function, symptom burden, and frequent hospital readmissions.7,10,11 Concurrently, family caregivers must cope with financial, emotional, and physical stressors.12 In several prior studies,12–18 caregivers of CCI patients were surveyed about their psychological responses. Despite heterogeneous characteristics of patients (eg, severity of illness, days of mechanical ventilation) and follow-up intervals (2 to 23 months), findings uniformly included a high incidence of depression12–18 that was comparable to the incidence of depression in caregivers of the frail elderly and twice the incidence of depression in the general population. Douglas and Daly12 reported decreased physical health and increased risk of depression in caregivers of CCI patients that exceeded reports for other populations of patients who require long-term caregiving, such as patients with Alzheimer’s disease and patients with spinal cord injury. When patients remained institutionalized, family caregivers reported a higher incidence of depression and burden, more disruption in daily schedules, more health problems, and less family support.14,16 Depressive symptoms decreased over time,13,18 but remained higher than in the general population. Notably, in an analysis of a national data set comprising almost 300 000 cases, a significantly higher risk of death was reported in spouses of persons who received mechanical ventilation for 4 days or longer.19 Reports of prior studies13,16–18 have described the challenges encountered by caregivers of CCI patients. However, most did not identify the specific lifestyle restrictions, distress, or problem behaviors of patients that were of most concern. In an effort to identify ways to support caregivers of CCI patients, it may be helpful to explore longitudinal changes in caregiver response as influenced by changes in the characteristics of patients. It is also important to identify specific areas that cause caregivers to experience greater lifestyle restriction and distress. Therefore, the purpose of this study was to describe perceived lifestyle restrictions and distress among caregivers of CCI patients at 1 and 6 months after ICU discharge. We also explored how caregivers’ lifestyle restrictions and distress differed according to the characteristics of the patients and the caregivers.