key: cord-0983840-jgzlj1pn authors: Kentish-Barnes, Nancy; Degos, Philonille; Viau, Clémence; Pochard, Frédéric; Azoulay, Elie title: “It was a nightmare until I saw my wife”: the importance of family presence for patients with COVID-19 hospitalized in the ICU date: 2021-05-11 journal: Intensive Care Med DOI: 10.1007/s00134-021-06411-4 sha: 6a94972e88f4bf9be864e2004bdca81bd2a12889 doc_id: 983840 cord_uid: jgzlj1pn nan Dear Editor, During the initial pandemic of coronavirus disease 2019 (COVID-19), visits in the intensive care unit (ICU) were either banned or highly restricted. Consequently, family members and patients were often separated from each other. Quantitative and qualitative research has shown that this restriction was an extremely difficult and even harmful experience for both family members and ICU clinicians [1, 2] . Lack of visits is a well-known risk factor for delirium [3] and studies have shown that extending visiting policies can strongly reduce both the incidence of delirium and its length [4] . In this qualitative pilot study that included semi-structured interviews with 12 ICU survivors of the COVID-19 9-10 months after their discharge, we sought to better understand the experience of patients' hospitalization in the ICU during the first wave of the pandemic (Supplemental material). Qualitative analysis provides an in-depth insight into the relationship between the patient and his loved-one in the ICU, although our data may not precisely translate how patients actually felt in the moment, given a potential for recall bias and the effect of media exposure between the ICU stay and the interviews. Most patients (9/12) reported having no memories of their ICU admission: their first memory was gaining consciousness after their coma (due to sedation for mechanical ventilation). Patients described being agitated and confused, not knowing whether their dreams were reality or not ( Once fully awake, patients discovered that they needed to re-learn how to walk, how to talk and how to eat ( Table 1, Q4) . Patients felt scared, lost, alone, and had no safe landmarks. The one event that brought them back to a reality with a real meaning was the presence of their loved-one (Table 1 , Q5 and 6). Patients with no visits felt that if they had benefited from the visit of a family member it would also have given them courage and energy to fight harder to leave the ICU as soon as possible, possibly reducing their length of stay (Table 1 , Q7 and Q8). Any contact or event related to their family increased their wellbeing (Table 1 , Q9). The emotional distress of waking up after such an experience was overwhelming and patients needed the help of their loved-ones to get through it. Family members are not simple visitors: they play active roles in the ICU and can help the patients by not only reassuring, comforting and guiding them but also by helping them integrate the ICU experience as part of their broader life story: meaning making is an essential part of getting better. Moreover, the absence or distance of their loved-ones increased their stress (Table 1 , Q10) and their concern that something terrible may have happened to them (Table 1, Q11) . Banning families from the ICU is deleterious at all times and specifically during the pandemic during which patients can spend weeks in a coma, thus increasing the *Correspondence: nancy.kentish@aphp.fr It was a mixture of nightmare and reality. I thought I had been kidnapped and I wanted to escape. I was afraid; I didn't understand anything (…). It was horrible, a nightmare, until I saw my wife, she was the one who allowed me to reconnect with reality. It was one visit but it was exceptional. It was she who helped me understand (…) because everything was blurred. After her visit, I began to recognize the caregivers around me and to understand where I was risk of delirium and vulnerability. While adapting visiting policies was undoubtedly necessary given the nature of the threat, our pilot study shows that patients suffered considerably from the absence of their loved-ones. Those who did benefit from a visit were able to feel safer and to give meaning to their hospitalization more rapidly. To avoid traumatic experiences [5] , specific patient-and family-centered guidelines for crisis management are urgently needed that include the possibility of regular family visits. Each person is a world in COVID-19 The lived experience of ICU clinicians during the coronavirus disease 2019 outbreak: a qualitative study Risk factors for delirium in intensive care patients: a prospective cohort study Prevalence and risk factors for delirium in critically ill patients with COVID-19 (COVID-D): a multicentre cohort study Compassionate communication and end-of-life care for critically ill patients with SARS-CoV-2 infection The study was approved by the research ethics board Sud Méditerranée (2020-A00809-30; CNRIPH: 20.03.27.73019). NKB and EA wrote the study protocol; PD and CV did the interviews; NKB, PD, CV, and FP analyzed the data and wrote the manuscript; NKB, PD, CV, FP, and EA revised the manuscript. Study funded by the French Ministry of Health, PHRC 2020, APHP200389. Conflicts of interest NKB, PD, CV and FP have no conflicts of interest to declare. EA has received fees for lectures from Gilead, Pfizer, Baxter, and Alexion, unrelated to the present work. His research group has been supported by Ablynx, Fisher and Payckle, Jazz Pharma, and MSD, outside the submitted work. Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. The online version contains supplementary material available at https:// doi. org/ 10. 1007/ s00134-021-06411-4.