Impact of the Coronavirus Pandemic on Pediatric Palliative Care Team Structures,Services,and Care Delivery

Abstract

Objectives:

Define the impact of the coronavirus pandemic on pediatric palliative care team structures, communication, and workflow; and describe the roles, responsibilities, and reflections of interdisciplinary team members.

Methods:

Cross-sectional online surveys were posted on seven professional Listservs from May 2020 to June 2020. Data were summarized descriptively and with semantic content analyses.

Results:

N = 207 surveys were completed by pediatric palliative program representatives from 80 cities, inclusive of physicians, nurses, child life, social workers, chaplains, and psychologists. Teams consulted on <20% of potential or presumed COVID-19 cases in their centers. Sixty percent of personnel were deemed “essential” during the pandemic. One-third of personnel remained in their usual work locale, with some shifting to support adult palliative services and others working remotely. Over 60% reported a sense of team “distance” compared with “close” team cohesion, associated with physical location of team members (p < 0.01) and frequency of team counseling, education, or support meetings (p < 0.02). All programs adopted a form of telehealth for patient care, although 41% did not receive telehealth training and 73% perceived unequal care quality with virtual care. Absence of pediatric patients' family members due to visitation policies, missing human presence and physical touch, concern for personal and colleague health, and fear of financial sustainability for programs were notable stressors.

Conclusions:

While the number of children diagnosed with COVID-19 receiving hands-on care from pediatric palliative care teams was reportedly low, the coronavirus pandemic vastly impacted pediatric palliative care team structure, daily services, and communication models warranting attentiveness to lessons learned and future direction.