Abstract Details

Title The Experiences And Needs Of Families Of Comatose Patients After Cardiac Arrest And Severe Neurotrauma: The Perspectives Of A National Key Stakeholders During An NIH-Funded Workshop

Topic Neurocritical Care

Presentation(s) S21 - Neurocritical Care (2:00 PM-2:12 PM)

Poster/Presentation
Number 006

Background

SABI happens sudden and unexpectedly, carrying high potential for life-long disability with substantial prognostic uncertainty. Comprehensive assessments of family experiences and specific support needs after SABI are lacking.

Objective To elicit real-world, “on-the-ground” perspectives about the experiences and needs of families of comatose patients with severe acute brain injury (SABI) early after cardiac arrest or severe neurotrauma.

Design/Methods We conducted a two-phase qualitative study: the Phase 1 formative phase included semi-structured interviews with 7 family members and 12 multidisciplinary healthcare professionals ([mHCPs]; physicians, ICU-nurses, paramedics, social workers, chaplains) at a U.S. academic medical-center. The Phase 2 confirmatory and expansive phase included a virtual workshop on 11/29/2020 with facilitated discussions with nationally recruited key stakeholders of 17 family members and 12 mHCPs. 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 comprised inductive and deductive approaches guided by a conceptual ecological model.

Results

We identified 4 major needs: 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 wayfinding and access to places for families to sleep, eat, and care for themselves; and 3) Opportunities for families to remain connected, sometimes physically, with their loved ones, social support networks, and the critical care team during resuscitation, near death, and even after recovery.

Conclusions Key stakeholders from across the nation provided novel insights regarding families’ experiences in comatose SABI patients and factors that can contribute to improved decision-making and long-term physical and emotional outcomes. Interventions to address these unmet needs offer promise for improved support of families of comatose SABI patients.

Authors/Disclosures
Susanne Muehlschlegel, MD, MPH, FAAN (Johns Hopkins School of Medicine) PRESENTER	Dr. Muehlschlegel has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Acasti Pharma Inc.. Dr. Muehlschlegel has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Acasti Pharma Inc.. The institution of Dr. Muehlschlegel has received research support from NIH. The institution of Dr. Muehlschlegel has received research support from NIH. The institution of an immediate family member of Dr. Muehlschlegel has received research support from NIH. Dr. Muehlschlegel has a non-compensated relationship as a Member of Board of Directors with Neurocritical Care Society that is relevant to AAN interests or activities.
Sarah Perman	No disclosure on file
Jonathan Elmer	No disclosure on file
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	No disclosure on file
Renee Kasperek-Wynn	Renee Kasperek-Wynn has nothing to disclose.
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	No disclosure on file
Robert Silbergleit	The institution of Robert Silbergleit has received research support from NIH.