Caregivers continue to experience distress

By Linda L. Chlan, RN, PhD, School of Nursing, University of Minnesota

Synopsis: Caregivers of the chronically critically ill report restrictions on personal and social aspects of their lives, they continue to be distressed by problematic patient behaviors, and they are most distressed by their loved ones' continued reports of pain and discomfort up to 6 months post-ICU discharge.

Source: Choi J, Donahoe M, Zullo T, et al. Caregivers of the chronically critically ill after discharge from the intensive care unit: Six month's experience. Am J Crit Care 2011;20:12-23.

Chronically critically ill" patients are projected to increase in number over the next 10 years.1 Little is known about their caregivers and how patient recovery influences these experiences over time.

Choi and colleagues enrolled 203 caregiver-patient dyads to describe lifestyle restrictions and distress, and to explore how these experiences are influenced by patient characteristics over time. A longitudinal survey design followed participants at 1 month and 6 months post-ICU discharge; 69 dyads remained in the study at 6 months. Feeling overwhelmed was the most common reason caregivers withdrew. Caregivers were employed white females between the ages of 31 and 70, were either a spouse or an adult child. Patients were 59% female, with a median age of 58.5 years, and had spent 25.5 days in the ICU with 23.5 of those receiving mechanical ventilation. Most (58%) had been weaned from ventilatory support at ICU discharge, with 74% weaned 1 month after discharge. No patients were discharged directly to home; most (52%) returned home by 6 months, 29% at 1 month; 19% had not returned home at 6 months. Many patients (64%) had not returned to their pre-ICU functional status level at 6 months.

Caregivers provided an evaluation of the patient's functional status using the Health Assessment Questionnaire (HAC) prior to ICU admission, at ICU discharge, and at 1 and 6 months post-ICU discharge. The Changes in Role Function (CRF) scale was used to measure perceived lifestyle restrictions. Caregiver distress was measured using an 18-item subscale modified from the Revised Memory and Behavior Problems Check-list. Lifestyle restrictions were highest for visiting with friends, restrictions in hobbies, and recreation at 1 month. Overall, lifestyle restrictions significantly decreased from 1 month (23) to 6 months (19.4; P = 0.003), although 35% of caregivers continued to report restrictions at 6 months. There was no difference in caregiver distress from 1 month to 6 months (8.9 to 7.9, respectively; P = 0.32). The number of perceived patient problem behaviors did not differ from 1 to 6 months (6.2 to 5.0; P = 0.06). Some problematic behaviors occurred more frequently at the 6-month period including: waking up others at night, comments related to feeling like a failure or having no worthwhile accomplishments, comments about death of self or others, having nightmares, and engaging in behaviors that are potentially dangerous to self or others. There was no difference in these problematic behaviors based on the location of the patients (home or facility) or in their functional status. Caregivers of patients who never returned home by 6 months and who did not regain similar functional status as prior to their ICU admission reported the highest lifestyle restrictions. Caregiver distress did not differ by patients' disposition or functional status. Caregivers were most distressed by the patients' continued pain or discomfort at 1 and 6 months post-ICU discharge.


Given the projected number of chronically critically ill patients by 2020 (600,000 patients per year),1 there will be more family members in the years to come feeling strained when it comes to caregiving roles. As reported in this study, there does not seem to be less distress for caregivers even when their loved ones are not being cared for in the home. There may be need for a variety of services to support caregivers, particularly in those who are employed outside of the home. It is important for clinicians to realize that caregivers and patients continue to face significant challenges long after they are discharged from the ICU. Clinicians must examine their practice to ensure interventions are being implemented that minimize or prevent functional status decline. Life does not miraculously return to "normal" once a chronically critically ill patient is discharged from the ICU.

An important finding from this study is the continued distress caregivers feel from problematic behaviors regardless of whether the patient is living at home or in a care facility. Further, there are ongoing symptom-management issues for these patients related to pain, discomfort, and impaired functional status. Patients in this study continued to experience functional status decrements, including muscle weakness, which emphasizes the necessity for care processes that minimize the severity or reduce the impact of weakness due to immobility. Prolonged periods of immobility are extremely detrimental not only to patients but also to their caregivers.

Only 34% of the enrolled dyads remained in the study, which limits the generalizability of these findings. Further, there was no direct assessment of patients' functional status, which limits the findings' reliability. Despite these limitations, this study highlights the need for clinicians to be keenly aware of the needs and challenges family members face in providing care to those patients who are in the increasing group of the chronically critically ill.


1. White AC, O'Connor HH, Kirby K. Prolonged mechanical ventilation: Review of care settings and an update on professional reimbursement. Chest 2008;133:539-545.