Abstract
Introduction: Both the patients and the relatives have physical and psychological health challenges, reduced quality of life and difficulties in resuming everyday life after admission to the intensive care unit (ICU). There is a lack of studies on COVID-19 patients and their relatives' experiences of admission to the ICU, where patients in addition to treatment of critical illness are isolated and have little contact with their relatives. Therefore, the aim of this study was to explore the patient's experience of admission to the ICU and the relatives' experience of being a relative in the ICU, focusing on communication and information with the healthcare professionals.
Methods: The study is a qualitative exploratory study with follow-up interview (lasted an average of 1.2 hours) of patients with COVID-19 admitted to a mixed medical-surgical ICU at a Danish hospital, and their relatives.
Semi-structured interviews were conducted 6-8 months after discharge from the ICU (October-December 2020), via video or in the hospital, depending on the families' preference. Interviews were recorded, transcribed verbatim and analyzed inspired by Hochmans 'Five Phases of Dyadic Analysis: Stretching the Boundaries of Understanding Family Relationships'.
Informed written consent were obtained. The hospital and Region of Southern Denmark approved the study (Journal no.: 20/37932).
Findings: We included four men and one woman, aged 56-83, all mechanically ventilated, sedated, cohort isolated and admitted to the ICU for 9-37 days. Four spouses and one son.
(1) The family's understanding of illness is redefined:
Patients and relatives experienced the course of the disease differently, some were afraid of dying or losing others were completely safe and secure in surviving. The different perspectives challenged the families in their mutual communication and understanding of illness in the aftermath.
(2) Twisted perception of reality means that a new family narrative was created:
The patients had reduced recollection of the admission and intense, unreal dreams and hallucinations. The relatives helped them remember and together they created a new common family narrative. In some cases, it also changed the division of roles in the family.
(3) Maintaining the family relationship happens in a triad with the ICU nurse:
TheICU nurses were the link between the patient and the relatives, through frequent information, great availability and clear communication, and the relatives experienced control, security and presence without being physically present. The patients felt that maintaining contact with their relatives by telephone and virtual visits was important.
Conclusion: Overall, families experienced that life was ‘turned upside down’ in connection with ICU admission due to COVID-19. Families re-establish new family-narrative starting at the ICU admission, and the ICU nurse was an active participant in the family dynamics and a link in maintaining the family relationship. Virtual visits can be a tool in that context.
Implications: The study contributes to a better understanding of needed information and communication caring for patients with COVID-19 and especially their families. It shows the importance of health professionals' interaction with and central role in maintaining family-dynamics and provide a person-family centered care in the ICU.