Unique Clinical Issues for Children with Pediatric Chronic Critical Illness and their Families

Targeting care for children with pediatric chronic critical illness can only happen when we understand the unique needs that they and their families have both as inpatients and outpatients.


To describe the experiences of families of children with chronic critical illness and of clinicians who regularly care for these patients.

Methodology & Progress

Semistructured interviews were conducted with 51 stakeholders known for their CCI expertise. Stakeholders were from 5 metropolitan areas and were either (1) interdisciplinary providers (inpatient and/or outpatient clinicians, home health providers, foster care affiliates, or policy professionals) or (2) parents of children with CCI. Interview transcripts were qualitatively analyzed for themes.


Caring for Chronically Critically Ill Infants. 2020 Perinatal Palliative Care Symposium, Christiana Care Hospital, Newark DE


Pediatric Chronic Critical Illness: Reducing Excess Hospitalizations. Boss RD, Williams EP, Henderson CM, Seltzer RR, Shapiro MC, Hahn E, Hutton N.  Hosp Ped 2017

Henderson CM, Williams EP, Shapiro MC, Hahn E, Wright-Sexton L, Hutton N, Boss RD. “Stuck in the ICU”: Caring for Children with Chronic Critical Illness. Ped Crit Care Med 2017;18(11):e561-e568. “It’s Relentless”—Providers’ Experience of Pediatric Chronic Critical Illness. Donohue PK, Williams EP, Wright-Sexton L, Boss RD.  J Pall Med 2018

Medical Foster Care for Children with Chronic Critical Illness: Identifying Strengths and Challenges. Seltzer R, Donohue P, Williams E, Boss RD.  Child and Youth Services Rev 2018

Project Lead

Renee D. Boss, M.D., M.H.S.

Renee D. Boss, M.D., M.H.S., is the Rembrandt Foundation Professor of Pediatric Palliative Care.  Dr. Boss is a faculty member at the Johns Hopkins Berman Institute of Bioethics and Associate Professor in the Division of Neonatal-Perinatal Medicine. Dr. Boss’s scholarship focuses on communication and decision-making for seriously ill infants and children.