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Stressors Experienced by Primary Caregivers of Severe Acute Brain Injury Patients Recovering from Coma in Neurointensive Care Units: Preliminary Findings from a Multicenter Qualitative Study
Neurology ; 98(18 SUPPL), 2022.
Article in English | EMBASE | ID: covidwho-1925387
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.
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Collection: Databases of international organizations Database: EMBASE Type of study: Qualitative research Language: English Journal: Neurology Year: 2022 Document Type: Article

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Collection: Databases of international organizations Database: EMBASE Type of study: Qualitative research Language: English Journal: Neurology Year: 2022 Document Type: Article