Caley Mikesell, BS
Research Assistant
Colegio de Ciencias de la Salud, Escuela de Medicina, Universidad San Francisco de Quito, USFQ, Quito, Ecuador, United States
Disclosure information not submitted.
Gabriela Bustamante, PhD, MPH
Professor
Colegio de Ciencias de la Salud, Escuela de Medicina, Universidad San Francisco de Quito, USFQ, Quito, Ecuador, United States
Disclosure information not submitted.
Kevin Zambrano, BS
Medical Student
Colegio de Ciencias de la Salud, Escuela de Medicina, Universidad San Francisco de Quito, USFQ, Quito, Ecuador, United States
Disclosure information not submitted.
Andrea Icaza-Freire, MD
Resident Physician
Colegio de Ciencias de la Salud, Escuela de Medicina, Universidad San Francisco de Quito, USFQ, Quito, Ecuador, United States
Disclosure information not submitted.
Danielle Aronowitz, MD
Resident
Long Island Jewish Medical Center, United States
Disclosure information not submitted.
Antonio W. Danilo Gavilanes, MD
Attending Physician
University Hospital Maastricht, Maastricht, The Netherlands, United States
Disclosure information not submitted.
Rafael Barrera, MD, FCCM, FCCP, FACN
Attending Physician
Long Island Jewish Medical Center, United States
Disclosure information not submitted.
Title: Opportunities for improvement in grief and bereavement care in pediatric intensive care units.
Introduction: Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the course of critical illness and can peak around the time of death or nondeath losses. The objective of this study was to assess how PICUs around the world implement grief and bereavement care (GBC) as part of an integrated model of care.
Methods: In this multicenter cross-sectional, prospective survey study, questionnaires regarding PICU infrastructure, personnel, and policies related to GBC, were distributed to patient families and clinical care providers located in several international PICUs. Multiple-choice and open-ended questions were used to assess fulfillment of GBC needs for both families and health care professionals (HCP) in each PICU. Questionnaires were scored using a custom scoring system based on indicators developed by the Initiative for Pediatric Palliative Care (IPPC). Average total and individual GBC fulfillment scores were compared according to the respective country’s World Bank income. Patient characteristics and details of unit infrastructure were also evaluated as potential predictors of total GBC fulfillment scores.
Results: The study included 34 PICUs from 18 countries: HICs: 32.4%, upper middle-income countries (UMICs): 44.1%, low middle income and low-income countries (LMI/LICs): 23.5%). Across all centers, fulfillment of the IPPC recommendations reached an average score of 37.5% (SD: 28.1%) for family-specific GBC and 42.1% (SD: 35.3%) for HCP-specific GBC. Scores for family-specific GBC ranged from 22.1% among the LIC/LMICs to the highest average score of 48.0% among HICs (p=.02). Availability of appropriate GBC services for families was higher among units in HICs (61.4%) compared to LICs (24.5%, p=0.004). Overall fulfillment scores for HCP-specific GBC increased from 22.3% in LIC/LMICs to 64.1% in HICs (p=0.001).
Conclusions: Significant differences in GBC for families and HCPs exist between institutions and can be related to the native countries’ income level. Barriers to provision include limited financial resources and GBC training, presence of a palliative care consultation service, and varying cultural perceptions of child death. Addressing these barriers may improve GBC in PICUs around the world.