title: From spouse to caregiver and back: a grounded theory study of post-intensive care unit spousal caregiving.
abstract: OBJECTIVE
  To explore the challenges and caring activities of spouses of intensive care unit survivors during the first year of patient recovery.
  
  
  BACKGROUND
  Every year, millions of people globally are discharged from an intensive care unit after critical illness to continue treatment, care and rehabilitation in general hospital wards, rehabilitation facilities and at home. Consequently, millions of spouses become informal caregivers. Little is known, however, about the concrete challenges spouses face in post-intensive care unit everyday life.
  
  
  METHODS
  Explorative, qualitative grounded theory study.
  
  
  METHODS
  Participants were spouses of intensive care unit survivors. The study was undertaken in Denmark in 2009-2010. Data consisted of 35 semi-structured dyad interviews at 3 and 12 months post-intensive care unit discharge, two group interviews with patients and two with spouses.
  
  
  RESULTS
  'Shifting their role from spouse to caregiver and back' was identified as the core category of the study. The role shifts progressed in a dynamic process involving four elements: (1) committing to caregiving; (2) acquiring caregiving skills; (3) negotiating level of caregiving and (4) gradually leaving the caregiver role. Post-ICU caregiving comprised five patient dimensions: observing, assisting, coaching, advocating and managing activities.
  
  
  CONCLUSIONS
  Spouses play a vital and multifaceted role in post-intensive care unit recovery. The findings can inform healthcare professionals in their efforts to prepare intensive care unit patients' families for the time following intensive care unit and hospital discharge. Hospital staff, rehabilitation experts and primary care professionals must acknowledge spouses' important contribution from intensive care unit admission throughout recovery.
authors.affiliation: Department of Anesthesiology and Intensive Care, Aarhus University Hospital, Denmark.
authors.forename: Anne Sophie
authors.initials: AS
authors.lastname: Ågård
authors.affiliation: University of Copenhagen, Health & Medical Sciences, Copenhagen University Hospital Rigshospitalet, Trauma Center, Denmark.
authors.forename: Ingrid
authors.initials: I
authors.lastname: Egerod
authors.affiliation: Department of Anesthesiology and Intensive Care, Aarhus University Hospital, Denmark.
authors.forename: Else
authors.initials: E
authors.lastname: Tønnesen
authors.affiliation: Faculty of Health Sciencies & Aarhus University Hospital, Aarhus University, Denmark.
authors.forename: Kirsten
authors.initials: K
authors.lastname: Lomborg
mesh_terms: D017028:Caregivers; D066296:Grounded Theory; D006801:Humans; D007362:Intensive Care Units; D018454:Spouses
keywords: ICU; caregivers; caregiving; critical care; family; grounded theory; intensive care; nursing; recovery; spouses