Voices from the Pandemic: A Qualitative Study of Family Experiences and Suggestions regarding the Care of Critically Ill Patients

Abstract

Rationale: Intensive care unit (ICU) visitation restrictions during the coronavirus disease (COVID-19) pandemic have drastically reduced family-engaged care. Understanding the impact of physical distancing on family members of ICU patients is needed to inform future policies. Objectives: To understand the experiences of family members of critically ill patients with COVID-19 when physically distanced from their loved ones and to explore ways clinicians may support them. Methods: This qualitative study of an observational cohort study reports data from 74 family members of ICU patients with COVID-19 at 10 United States hospitals in four states, chosen based on geographic and demographic diversity. Adult family members of patients admitted to the ICU with COVID-19 during the early phase of the pandemic (February-June 2020) were invited to participate in a phone interview. Interviews followed a semistructured guide to assess four constructs: illness narrative, stress experiences, communication experiences, and satisfaction with care. Interviews were transcribed verbatim and analyzed using an inductive approach to thematic analysis. Results: Among 74 interviewees, the mean age was 53.0 years, 55% were white, and 76% were female. Physical distancing contributed to substantial stress and harms (nine themes). Participants described profound suffering and psychological illness, unfavorable perceptions of care, and weakened therapeutic relationship between family members and clinicians. Three communication principles emerged as those most valued by family members: contact, consistency, and compassion (the 3Cs). Family members offered suggestions to guide clinicians faced with communicating with physically distanced families. Conclusions: Visitation restrictions impose substantial psychological harms upon family members of critically ill patients. Derived from the voics of family members, our findings warrant strong consideration when implementing visitation restrictions in the ICU and advocate for investment in infrastructure (including staffing and videoconferencing) to support communication. This study offers family-derived recommendations to operationalize the 3Cs to guide and improve communication in times of physical distancing during the COVID-19 pandemic and beyond.

Keywords: communication; coronavirus disease; critical care; postintensive care syndrome-family.

Figure 1.

Descriptive model of family stress and support derived from qualitative interviews. Family members of intensive care unit patients with COVID-19 experienced substantial stress from a variety of factors, particularly ruminating around feeling isolated (center circle) owing to lack of physical touch, guilt, and decisional conflict, and feeling unable to appropriately advocate for loved ones. These factors led to stress (red box), which was also exacerbated by clinician factors (blue box on left), including the fractured therapeutic relationship from physical distancing. Pandemic factors (blue box on right) also contributed to the stress, such as societal discourse about the pandemic. That said, there were also clinician factors that supported the family (green box), and these included the 3Cs and videoconferencing. Pandemic factors, such as the dialogue and gratitude around the healthcare workers’ sacrifice, also contributed positively and supported families’ experiences. 3Cs = contact, consistency, and compassion; COVID-19 = coronavirus.