Recollections of the Intensive Care Unit Experience Among Families of Patients with COVID-19

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RATIONALE: Clinicians typically encourage family presence in the Intensive Care Unit (ICU) as a way to improve both patient and family outcomes. To limit the spread of the disease, families were typically prohibited from visiting the ICU during the COVID-19 pandemic. Little is known about the approach clinicians should take when engaging with families in times when they cannot visit the hospital. METHODS: Surrogates of critically ill patients with COVID-19 who participated in a clinical trial at a single academic center were contacted after ICU discharge to participate in a follow up study dealing with their ICU experience. Upon enrollment in this post-ICU discharge study, the subject (surrogate of the ICU patient) completed the Critical Care Family Needs Inventory (CCFNI) questionnaire and participated in a semi-structured telephone interview. The CCFNI questionnaire includes 14 questions dealing with aspects of the ICU experience that are important to family members. The answers to each question range from 1 (almost all the time) to 4 (none of the time), with lower scores indicating a better experience. Telephone interviews were transcribed and coded using thematic content analysis. RESULTS: Of the 58 subjects enrolled from September 2020 to December 2020, 23 (40%) respective patients were deceased. Subjects of deceased patients had higher median CCFNI scores than subjects of surviving patients, reflecting greater dissatisfaction with the ICU experience (1.82 [1.45-2.00] vs 1.45 [1.27-1.72], respectively, p=0.009). Subjects recollected that they typically received at least one medical update from the patient's ICU team each day. While many subjects felt that telephone communication with the ICU team was adequate, some believed they were unable to fully understand the patient's condition. In addition, some subjects feared the patient was clinically worsening when they did not receive frequent updates, which had a negative impact on their experience. Nearly all subjects reported that visitor restrictions made the ICU experience more difficult. Some subjects believed that the medical decisions that were made and the care the patient received were negatively impacted by not having family present at the bedside. CONCLUSION: During the COVID-19 pandemic, families of critically ill patients typically received medical updates by phone daily because they were unable to visit. These aspects of ICU care delivery had differential effects on the ICU experience of families, with more negative experiences among families of deceased patients. These data suggest that more individualized approach to family engagement is needed during times of visitor restrictions.