ABSTRACT
Objective: To understand the psychosocial stressors reported by caregivers of severe acute brain injury (SABI) patients recovering from coma in neuroICUs. Background: Caregivers of SABI patients are at risk of developing long-term adverse psychological outcomes following neuroICU discharge, particularly those of patients admitted in a comatose state and remaining disabled. Understanding the top psychosocial stressors reported by these caregivers is critical for design of interventions to improve psychological outcomes. Design/Methods: At the time of neuroICU discharge, we conducted semi-structured, recorded interviews with 15 primary caregivers of SABI patients, all of whom were comatose for greater than 24 hours and needed tracheostomy and/or feeding tube placement. Participants were recruited as a convenience sample from 6 US centers. A codebook for psychosocial stressors was developed from open coding of the first 5 interview transcripts amongst 9 study team members. Using NVivo software, two team members then independently coded each transcript, refined the codebook, and resolved coding discrepancies. Results: Fourteen of 15 caregivers provided demographic data: 13 (92.9%) were female, 5 (35.7%) were racial minorities, and 9 (64.3%) reported fewer than 4 years of college. Six of the 15 (40.0%) patients had recovered to a Glasgow Coma Scale of 9 or higher at the time of interview. The psychosocial stressors most commonly reported by participants were: navigation of the healthcare system, including hospital visitor restrictions due to COVID-19;uncertainty about prognosis;communication with healthcare providers;juggling of practical matters beyond the hospitalization;and navigation of social relationships. Caregivers also referenced challenges with direct caregiving responsibilities, changes to the relationship dynamic with the hospitalized patient, and loss of normality. Conclusions: Across multiple US centers, caregivers of SABI patients in various stages of coma recovery at time of neuroICU discharge share a wide variety of psychosocial stressors. Interventions designed to improve psychological outcomes will need to acknowledge these stressors directly.