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. 2011 Jan;20(1):12-22; quiz 23.
doi: 10.4037/ajcc2011243.

Caregivers of the chronically critically ill after discharge from the intensive care unit: six months' experience

JiYeon Choi  1 , Michael P Donahoe, Thomas G Zullo, Leslie A Hoffman
Affiliations

Caregivers of the chronically critically ill after discharge from the intensive care unit: six months' experience

JiYeon Choi et al. Am J Crit Care. 2011 Jan.

Abstract

Background: Chronically critically ill patients typically undergo an extended recovery after discharge from the intensive care unit, making involvement of family caregivers essential. Prior studies provide limited detail about specific ways this experience affects caregivers.

Objectives: To (1) describe lifestyle restrictions and distress among caregivers of chronically critically ill patients 1 and 6 months after discharge and (2) explore how caregivers' lifestyle restrictions and distress differ according to patients' and caregivers' characteristics.

Methods: Sixty-nine chronically critically ill patients and their family caregivers completed follow-up at 1 and 6 months after discharge from the intensive care unit. Data were collected from medical records and survey via telephone or mail.

Results: Caregivers' perceived lifestyle restrictions (Changes in Role Function) decreased from 1 month (mean [SD], 23.0 [8.3]) to 6 months (19.4 [8.6]) after discharge (P = .003), although patients' problem behaviors and caregivers' distress (8.9 [9.3] vs 7.9 [9.6], respectively; P = .32) did not change. Change in caregivers' lifestyle restrictions differed by patients' disposition (P = .02) and functional status (Health Assessment Questionnaire; P = .007). Caregiver's lifestyle restrictions remained high when patients never returned home or never recovered their preadmission functional status. Caregivers reported the most restrictions in social life and personal recreation. Patients' negative emotions and pain caused the most caregiver distress.

Conclusions: Caregivers of chronically critically ill patients perceived fewer lifestyle restrictions over time but reported no change in patients' problem behaviors or distress. Lifestyle restrictions and distress remained high when patients never returned home or regained their preadmission functional status.

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Figures

Figure 1
Figure 1. Subject enrollment and follow-up
Abbreviation: ICU, intensive care unit.
Figure 2
Figure 2
Change in scores on the Health Assessment Questionnaire from before admission to 6 months after discharge from the intensive care unit (ICU) for patients who completed the 6 months follow-up. Higher scores indicate worse functional status. Numbers on the figure indicate the mean score and the lines indicate the 95% confidence interval at each data collection point.
See this image and copyright information in PMC

References

    1. National Family Caregivers Association. Caregiver statistics: statistics on family caregivers and family caregiving. 2008. [Accessed February 11, 2008]. http://www.thefamilycaregiver.org/who/stats.cfm.
    1. Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA. 1999;282(23):2215–2219. - PubMed
    1. Schulz R, Newsom J, Mittelmark M, Burton L, Hirsch C, Jackson S. Health effects of caregiving: the caregiver health effects study—an ancillary study of the Cardiovascular Health Study. Ann Behav Med. 1997;19(2):110–116. - PubMed
    1. Chronically Critically Ill. CCI definition. 2005. [Accessed December 8, 2009]. http://fpb.case.edu/ChronicallyCriticallyIll/definitions.shtm.
    1. Combes A. The long and difficult road to better evaluation of outcomes of prolonged mechanical ventilation: not yet a highway to heaven. Crit Care. 2007;11(1):120. - PMC - PubMed

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