title: Caregivers of the chronically critically ill after discharge from the intensive care unit: six months' experience.
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.
  
  
  OBJECTIVE
  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.
authors.affiliation: Department of Acute/Tertiary Care, University of Pittsburgh School of Nursing, PA 15261, USA. jic11@pitt.edu
authors.forename: JiYeon
authors.initials: J
authors.lastname: Choi
authors.forename: Michael P
authors.initials: MP
authors.lastname: Donahoe
authors.forename: Thomas G
authors.initials: TG
authors.lastname: Zullo
authors.forename: Leslie A
authors.initials: LA
authors.lastname: Hoffman
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D002908:Chronic Disease; D016638:Critical Illness / Q000451:nursing*; D004502:Education, Medical, Continuing; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007362:Intensive Care Units; D008019:Life Style; D008297:Male; D008875:Middle Aged; D010351:Patient Discharge; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D055815:Young Adult