The Experiences and Needs of Families of Comatose Patients After Cardiac Arrest and Severe Neurotrauma: The Perspectives of National Key Stakeholders During a National Institutes of Health-Funded Workshop

Abstract

Objectives: Severe acute brain injury (SABI) from cardiac arrest and traumatic brain injury happens suddenly and unexpectedly, carrying high potential for lifelong disability with substantial prognostic uncertainty. Comprehensive assessments of family experiences and support needs after SABI are lacking. Our objective is to elicit "on-the-ground" perspectives about the experiences and needs of families of patients with SABI.

Design: Two-phase qualitative study of families and multidisciplinary U.S. healthcare professionals (mHCPs) with expertise in SABI: Phase 1 included semistructured interviews to generate formative findings; phase 2 entailed facilitated discussions to confirm and expand initial findings.

Setting: Phase 1: academic medical center; phase 2: virtual workshop.

Subjects: Phase 1 included seven family members and 12 mHCPs. Phase 2 included nationally recruited stakeholders (17 family members and 12 mHCPs).

Intervention: None.

Measurements and results: We explored: 1) what are families' needs in the first 48 hours? 2) How are these needs addressed? and 3) How can hospitals better meet these needs? Qualitative analysis included inductive and deductive approaches guided by a conceptual ecological model. Four major needs were identified: 1) challenges in coping with uncertainty in early prognostication, 2) inattention to physical needs of family, 3) deficits in compassionate and consistent communication, and 4) need for engagement with families as stakeholders in improving future practices. Participants' recommendations included: 1) ways to communicate more clearly and consistently, 2) better assistance with navigating resources and access to places for families to care for themselves, and 3) opportunities for families to remain connected with their loved ones, social support networks, and the clinical team.

Conclusions: Stakeholders identified novel insights regarding families' experiences during the hospitalization of comatose SABI patients and factors that can contribute to improved decision-making and physical/emotional outcomes. Interventions to address these unmet needs are promising targets to improve outcomes.

Keywords: cardiac arrest; emergency medicine; family experience; neurocritical care; physician-family communication; qualitative research; traumatic brain injury.

Figure 1.

Analytical framework. We applied a framework, grouping family members’ experiences into five domains based on an ecological model adapted from the National Institute on Minority Health and Health Disparities where there are multiple and bidirectional interactions among the domains and levels of influence (12). The five domains included: information (verbal or written information about the patient’s status or care and navigating the hospital), communication (how this information is conveyed to the family member), emotional (range of emotional needs), sociocultural (how cultural, religious, and social beliefs affect family members’ experiences), and physical (how the hospital physical environment can be better suited for family members). ED = emergency department.