Pediatric Chronic Critical Illness Research & Ethics

Supporting parents and clinicians as they care for children with multi-system disease, dependence on medical technology and frequent/prolonged hospitalizations

The Pediatric Chronic Critical Illness Research & Ethics Program addresses issues related to medical decision-making, family experiences, long-term placement options, palliative care, and end-of-life care for children with chronic critical illness (CCI). This work arises from the increased number of children with CCI and their unique care needs. Children with CCI, their families, and their providers do not receive all of the supports that they need to thrive, both inside and outside of the hospital.

This research program engages with leaders in medicine, bioethics, and public health to expand the evidence-base for novel approaches to care for children with CCI and their loved ones.

Current Projects

Pediatric Chronic Critical Illness Collaborative
Connecting researchers and students interested in pediatric chronic critical illness to build the evidence-base for care
The Ventilator Nurse Training (VeNT) Program
Building community capacity to care for children on chronic home ventilation through simulation training
Pediatric Chronic Mechanical Ventilation Decision-Making Tool
Helping families make informed decisions for their child and family by hearing the lived-experiences of others who chose for and against pediatric chronic mechanical ventilation
Raising Children with Medical Complexity: Issues in Housing and Household Expenses
Assessing the housing challenges for children with special health care needs in the State of Maryland
Building Clinician-Parent Partnerships to Improve Care for Chronically Critically Ill Children
Designing targeted, innovative educational interventions to optimize patient well-being, empower family partners, and harness hospital resources

Past Projects

Exploring Medical Foster Care

Exploring medical foster care as a placement option for children with medical complexity.

Click here to learn more about this project.

Pediatric Home Health Care for Children with Pediatric Chronic Critical Illness

Documenting pediatric home health care barriers and facilitators to help children live at home with their families.

Click here to learn more about this project.

Levi Symposium 2019: Where can they live? The Ethical Challenges of Gaps in Community Supports, Services, and Placement Options for Children with Medical Complexity

Bringing together diverse stakeholders across Maryland (and beyond) to share knowledge related to placement and service gaps and brainstorm policies and practices that can address the needs of children with complex medical needs.

 

Click here to learn more about this project.

A Snapshot of Pediatric Chronic Critical Illness in the United States

Assessing the point prevalence of pediatric chronic critical illness at six academic pediatric referral centers in the United States. Click here for more information.

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

Highlighting concerns of experts in pediatric chronic critical illness (e.g. providers and parents). Click here for more information about this project.

Contributing Berman Institute Members

Renee Boss, MD, MHS
Core Faculty; Professor
Nicholas Jabre, MD
Hecht-Levi Fellow
Rebecca R. Seltzer, MD, MHS
Associate Faculty; Assistant Professor
Ali Ruth
PhD Student

Selected Publications

Defining Pediatric Chronic Critical Illness for Clinical Care, Research, and Policy
  • Shapiro MC, Henderson CM, Hutton N, Boss RD.  Defining Pediatric Chronic Critical Illness for Clinical Care, Research, and Policy. Hosp Pediatrics 2017;7(4):236-244
Inpatient Impact of Pediatric Chronic Critical Illness
  • Rogozinski L, Young A, Grybauskas C, Donohue PK, Boss RD, Biondi E. Point Prevalence of Children Hospitalized with Chronic Critical Illness on the General Inpatient Units. Hosp Ped 2019;9(7):545-49.
  • Boss RD, Henderson CM, Weiss EM, Falck A, Madrigal V, Shapiro MC, Williams EP, Donohue PK on behalf of the Pediatric Chronic Critical Illness Collaborative. The Changing Landscape in Pediatric Hospitals: A multicenter study of how pediatric chronic critical illness impacts NICU throughput. Am J Perinat 2020
  • Boss RD, Williams EP, Henderson CM, Seltzer RR, Shapiro MC, Hahn E, Hutton N. Pediatric Chronic Critical Illness: Reducing Excess Hospitalizations. Hosp Ped 2017; hpeds.2016-0185
  • 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.
  • Marcus KL, Henderson CM, Boss RD. Chronic Critical Illness in Infants and Children: A Speculative Synthesis on Adapting ICU Care to Meet the Needs of Long-Stay Patients. Ped Crit Care Med 2016. 17(8): 743-52.
  • Troch R, Schwartz J, Boss RD. Slow and Steady: A Systematic Review of ICU Care Models Relevant to Pediatric Chronic Critical Illness. J Ped Intens Care 2020; 9(4):233-40.
Home Care for Children with Pediatric Chronic Critical Illness
  • Fratantoni K, Raisanen J, Boss RD, Miller J, Detwiler K, Huff S, Neubauer K, Donohue PK. The Process of Pediatric Home Health Care Services: Perspectives of those who prescribe, provide, and receive care. Pediatrics 2019;Sept 144(3):e20190897.
  • Boss RD, Raisanen J, Detwiler K, Fratantoni K, Huff S, Neubauer K, Donohue PK. The Lived Experience of Pediatric Home Health Care for Children with Medical Complexity and their Parents. Clin Pediatrics 2020;59(2):178 63.
Family Experience of Pediatric Chronic Critical Illness
  • Donohue PK, Williams EP, Wright-Sexton L, Boss RD. “It’s Relentless”—Providers’ Experience of Pediatric Chronic Critical Illness. J Pall Med 2018;21(7):940-946.
  • Boss RD, Henderson CM, Raisanen JC, Jabre JA, Shipman K, Wilfond BS. Family Experiences Deciding For and Against Pediatric Home Ventilation. J Pediatrics 2020; Feb;229:223-231.
  • Barone A, Boss RD, Raisanen JC, Shepard J, Donohue PK. Our Life at Home: Photos from families inform discharge planning for medically complex children. Birth 2020;47(3):278-89.-87.
Clinician Impact of Pediatric Chronic Critical Illness
  • Shapiro M, Donohue PK, Kudchadkar SN, Hutton N, Boss RD. Professional Responsibility, Consensus and Conflict: A Survey of Physician Decisions for the Chronically Critically Ill in Neonatal and Pediatric Intensive Care Units. Ped Crit Care Med 2017;18(9):e415-e422.
  • Hirschfeld R, Barone S, Johnson E, Boss RD. Pediatric Chronic Critical Illness: Gaps in Inpatient Intrateam Communication.  Ped Crit Care Med 2019;20(21):e546-555.
  • Boss RD, Hirschfeld R, Barone S, Johnson E, Arnold R. Pediatric Chronic Critical Illness: Training teams to address the communication challenges of patients with repeated and prolonged hospitalizations. J Pain Symp Manage 2020;60(5):959-67.
Ethical challenges related to Pediatric Chronic Critical Illness
  • Boss RD, Falck A, Goloff N, Hutton N, Miles A, Shapiro M, Weiss E, Donohue P on behalf of the Pediatric Chronic Critical Illness Collaborative. Low prevalence of palliative care and ethics consultations for children with chronic critical illness. Acta Ped 2018;107(10):1832-1833.
  • Ruth A, Boss RD, Donohue P, Shapiro M, Raisanen J, Henderson CM. Living in the Hospital: The Vulnerability of Children with Chronic Critical Illness. J Clin Ethics 2020;31(4):340-352.
  • Seltzer R, Singleton M, Boss RD. Children with Medical Complexity in Foster Care: Do Research “Protections” Make this “Vulnerable Population” More Vulnerable? Jour Clin Ethics 2018;29(2):145-49.
  • Miles A, Rushton CR, Wise B, Boss RD. Pediatric Chronic Critical Illness, Prolonged ICU Admissions, and Clinician Distress. J Ped Intens Care 2021