Abstract
During the initial surge of the COVID-19 pandemic, family members were often separated from their loved ones admitted to intensive care units (ICUs), with a potential for negative experiences and psychological burden. To better understand the experiences of bereaved family members of patients who died in an ICU during the COVID-19 pandemic, from the time of hospital admission until after the patient's death. This qualitative study used semistructured, in-depth interviews to collect experiences from bereaved family members of patients who died from severe COVID-19 in 12 ICUs during the first wave of the pandemic in France. Purposeful sampling was used to ensure the diversity of study participants with respect to sex, age, relationship with the patient, and geographic location. All data were collected between June and September 2020, and data analysis was performed from August to November 2020. Interviews were conducted 3 to 4 months after the patient's death and were audio-recorded and analyzed using thematic analysis. Among 19 family members interviewed (median [range] age, 46 [23-75] years; 14 [74%] women), 3 major themes emerged from qualitative analysis. The first was the difficulty in building a relationship with the ICU clinicians and dealing with the experience of solitude: family members experienced difficulties in establishing rapport and bonding with the ICU team as well as understanding the medical information. Distance communication was not sufficient, and participants felt it increased the feeling of solitude. The second involved the patient in the ICU and the risks of separation: because of restricted access to the ICU, family members experienced discontinuity and interruptions in the relationship with their loved one, which were associated with feelings of powerlessness, abandonment, and unreality. The third was regarding disruptions in end-of-life rituals: family members described "stolen moments" after the patient's death, generating strong feelings of disbelief that may lead to complicated grief. This qualitative study found that during the initial wave of the COVID-19 pandemic in France, bereaved family members described a disturbed experience, both during the ICU stay and after the patient's death. Specific family-centered crisis guidelines are needed to improve experiences for patients, families, and clinicians experiences.
Highlights
During the initial surge of the COVID-19 pandemic, hospital visits were either banned or highly restricted, and family members were often separated from their loved ones admitted to intensive care units (ICUs).[1]
The first was the difficulty in building a relationship with the ICU clinicians and dealing with the experience of solitude: family members experienced difficulties in establishing rapport and bonding with the ICU team as well as understanding the medical information
The second involved the patient in the ICU and the risks of separation: because of restricted access to the ICU, family members experienced discontinuity and interruptions in the relationship with their loved one, which were associated with feelings of powerlessness, abandonment, and unreality
Summary
During the initial surge of the COVID-19 pandemic, hospital visits were either banned or highly restricted, and family members were often separated from their loved ones admitted to intensive care units (ICUs).[1] Relatives were no longer allowed to be at the patient’s bedside, which may have compromised their involvement in decision-making. After a death in the ICU, bereaved family members are at high risk of presenting symptoms that can negatively impact their quality of life, such as anxiety, depression, posttraumatic stress disorder symptoms,[4,5] and complicated grief.[6] Interestingly, witnessing terminal dyspnea and not being able to say goodbye to a loved one are factors associated with increased psychological burden among relatives.[6] we speculated that the COVID-19 pandemic and the protective measures implemented in its wake may have exacerbated these negative experiences.[7]
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