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. In the context of limited resources, there are major ethical dilemmas surrounding care; currently, 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
A Qualitative Look Into Pediatric Home Health Care
Helping children with medical complexity receive the services that they need to live at home with their families
Exploring Medical Foster Care
Exploring medical foster care as a placement option for children with medical complexity
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

Past Projects

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

Stakeholder Perspectives of Pediatric Chronic Critical Illness

Highlighting concerns of experts in pediatric chronic critical illness (e.g. providers and parents)

Contributing Berman Institute Members

Renee Boss, MD, MHS
Core Faculty; Associate Professor
Nicholas Jabre, MD
Hecht-Levi Fellow
Jessica Raisanen, MSPH
Senior Research Program Coordinator
Ali Ruth
PhD Student
Rebecca R. Seltzer, MD, MHS
Associate Faculty; Assistant Professor

Selected Publications

Defining Pediatric Chronic Critical Illness for Clinical Care, Research, and Policy
  • Shapiro, M.C., Henderson, C.M., Hutton, N., Boss, R.D. (2017). Hospital Pediatrics.
“It’s Relentless”: Providers’ Experience of Pediatric Chronic Critical Illness
  • Donohue, P.K., Williams, E.P., Wright-Sexton, L., Boss, R.D. (2018). Journal of Palliative Medicine. 
Medical Foster Care: What happens when children with medical complexity cannot be cared for by their families?
  • Seltzer, R.R., Henderson, C.M., Boss, R.D. (2016). Pediatric Research.
Low Prevalence of Palliative Care and Ethics Consultations for Children with Chronic Critical Illness 
  • Boss, R.D., Falck, A., Goloff, N., Hutton, N., Miles, A., Shapiro, M., Weiss, E.M., Donohue, P.K., on behalf of the PCCI Collaborative. (2018). Acta Paediatrica. 
Pediatric Chronic Critical Illness: Reducing Excess Hospitalizations
  • Boss, R.D., Williams, E.P., Henderson, C.M., Seltzer, R.R., Shapiro, M.C., Hahn, E., Hutton, N. (2017). Hospital Pediatrics. 
Language Matters: Identifying Medically Complex Children in Foster Care
  • Williams, E.P., Seltzer, R.R., Boss, R.D. (2017). Pediatrics.