title: Changing support needs of survivors of complex critical illness and their family caregivers across the care continuum: a qualitative pilot study of Towards RECOVER.
abstract: BACKGROUND
  Survivors of complex critical illness and their family caregivers require support during their recovery, rehabilitation, and return to community living; however, the nature of these supports and how they may change over time remain unclear. Using the Timing It Right framework as a conceptual guide, this qualitative pilot study explored survivors' and caregivers' needs during the episode of critical illness through their return to independent living.
  
  
  METHODS
  Five survivors and seven family caregivers were recruited and consented from the main Towards RECOVER pilot study, designed to characterize the long term outcomes of survivors of the ICU who have been mechanically ventilated for more than one week. Using the Timing It Right framework, we prospectively conducted qualitative interviews to explore participants' experiences and needs for information, emotional support, and training at 3, 6, 12, and 24 months after intensive care unit (ICU) discharge. We completed 26 interviews, which were audio recorded, professionally transcribed, checked for accuracy, and analyzed using framework methodology.
  
  
  RESULTS
  In this small pilot sample, caregiver and patient perspectives were related and, therefore, are presented together. We identified 1 overriding theme: survivors do not experience continuity of medical care during recovery after critical illness. Three subthemes highlighted the following: (1) informational needs change across the care continuum, (2) fear and worry exist when families do not know what to expect, and (3) survivors transition from dependence to independence.
  
  
  CONCLUSIONS
  Interventions designed to improve family outcomes after critical illness should address both survivors' and caregivers' support needs as they change across the illness and recovery trajectory. Providing early intervention and support and clarifying expectations for transitions in care and recovery may decrease fears of the unknown for both caregivers and survivors. Ongoing family-centered follow-up programs may also help survivors regain independence and help caregivers manage their perceived responsibility for the patients' health. Using these insights for intervention development could ultimately improve long-term outcomes for both survivors and caregivers.
authors.affiliation: Department of Occupational Sciences and Occupational Therapy, University of Toronto, Toronto, ON, M5G 1 V7, Canada. Electronic address: anna.czerwonka@utoronto.ca.
authors.forename: Anna I
authors.initials: AI
authors.lastname: Czerwonka
authors.affiliation: University Health Network, NCSB 11C-1180, Toronto, ON, M5G 2 N2, Canada; Department of Medicine, University of Toronto, Toronto, ON, M5G 2C4, Canada. Electronic address: margaret.herridge@uhn.on.ca.
authors.forename: Margaret S
authors.initials: MS
authors.lastname: Herridge
authors.affiliation: Department of Occupational Sciences and Occupational Therapy, University of Toronto, Toronto, ON, M5G 1 V7, Canada; University Health Network, NCSB 11C-1180, Toronto, ON, M5G 2 N2, Canada. Electronic address: linda.chan@uhn.on.ca.
authors.forename: Linda
authors.initials: L
authors.lastname: Chan
authors.affiliation: University Health Network, NCSB 11C-1180, Toronto, ON, M5G 2 N2, Canada. Electronic address: leslie.chu@uhn.on.ca.
authors.forename: Leslie Michele
authors.initials: LM
authors.lastname: Chu
authors.affiliation: University Health Network, NCSB 11C-1180, Toronto, ON, M5G 2 N2, Canada. Electronic address: andrea.matte@uhn.on.ca.
authors.forename: Andrea
authors.initials: A
authors.lastname: Matte
authors.affiliation: Department of Occupational Sciences and Occupational Therapy, University of Toronto, Toronto, ON, M5G 1 V7, Canada; University Health Network- Toronto Rehabilitation Institute, Toronto, ON, M5G 2A2, Canada. Electronic address: jill.cameron@utoronto.ca.
authors.forename: Jill I
authors.initials: JI
authors.lastname: Cameron
mesh_terms: D000328:Adult; D017028:Caregivers / Q000523:psychology; D003266:Continuity of Patient Care / Q000458:organization & administration / Q000592:standards; D016638:Critical Illness; D005190:Family / Q000523:psychology*; D005260:Female; D018575:Home Care Services, Hospital-Based; D006801:Humans; D007362:Intensive Care Units; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010351:Patient Discharge; D010865:Pilot Projects; D036301:Qualitative Research; D017741:Survivors / Q000523:psychology*
keywords: Critical illness; Family caregiver; ICU; Long term mechanical ventilation; Outcomes; Qualitative