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.

Stress-Related Disorders of Family Members of Patients Admitted to the Intensive Care Unit With COVID-19

“…Of the 102 participants enrolled for qualitative interviews, 74 completed interviews (Figure 1), with full qualitative results reported separately. 33 Because quantitative analysis revealed a novel association between ethnicity and IES-6 scores, we developed qualitative matrices for these subgroups (Table 3), comparing themes and codes for those with high (≥10) vs low (<10) IES-6 scores. Although we did not identify themes that were unique to the subgroups, differences in coding patterns were identified.…”

Family caregiver inclusion is not a level playing field: toward equity for the chosen families of sexual and gender minority patients

“…The evidence is emphatic: health professionals must understand family relationships and attune communication and clinical interventions to both the patient’s values and the experience of the chosen family caregiver. 34 – 36 As standards develop to alleviate the caregiver crisis, we must pause-family caregivers are not a monolith and family caregiver inclusion is not a level playing field. There must be widespread, sustained adoption of multilevel interventions to dismantle barriers that prevent SGM patients and their chosen families from experiencing safety and belonging.…”

Family caregivers’ responses to a visitation restriction policy at a Korean surgical intensive care unit before and during the coronavirus disease 2019 pandemic

“…Since the start of the COVID-19 pandemic, many ICUs have restricted visitors' access [7] with the main purpose of preventing the spread of lifethreatening infections and optimizing the allocation of limited resources, including personal protective equipment. However, continuing this well-meaning restriction became a matter of concern due to its negative consequences for all stakeholders, such as emotional distress and delirium in patients [8], physical and psychological distress to family caregivers [9], and decision burden and moral distress in ICU clinicians [10].…”