• Leah J Beight, Gabrielle Helton, Madeline Avery, Veronica Dussel, and Joanne Wolfe.
• Department of Psychosocial Oncology and Palliative Care (L.J.B., G.H., M.A., V.D., J.W.), Dana-Farber Cancer Institute. Boston, MA, USA.
• J Pain Symptom Manage. 2022 Jan 1; 63 (1): 52-60.

ContextFew studies have explored the impact of the Coronavirus Pandemic (COVID-19) on the care of seriously ill children which may be especially affected due to the child's vulnerability, complexity of care, and high reliance on hospital-based care.ObjectiveTo explore parental and adolescent perspectives on the impact of COVID-19 on care of seriously children.MethodsWe recruited a convenience sample of families of seriously ill children between September and December 2020. The study involved a semi-structured interview through Zoom followed by an online sociodemographic survey. Interviews were transcribed and coded using the constant comparison method. The sample intended to represent diversity in child age and diagnoses, and family sociodemographic characteristics.ResultsSixty-four families were approached; 29 enrolled (response rate 45%), including 30 parents and three AYAs. Most parents and AYAs identified as white (62%). Some families reported new financial hardships, with 17.2% having difficulty paying bills after March 2020 compared to 6.9% before. Emerging themes from interviews included additional roles parents managed due to cancelled services or shifting to telehealth, increased isolation, high emotional distress due increased in-home demands, uncertainty, and visitor restrictions in medical facilities, and benefits and challenges to telehealth. One positive outcome was the use of a hybrid care model whereby families choose telehealth appointments and in-person services, when necessary.ConclusionFamilies caring for seriously ill children during COVID-19 face increased challenges. Health systems should consider long-term telehealth/in-person hybrid care models that have potential to improve access to and satisfaction with care.Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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