Building Clinician-Parent Partnerships to Improve Care for Chronically Critically Ill Children

Families and clinicians report feeling unprepared to care for children with CCI.

Children with chronic critical illness often have repeated hospitalizations, dependence on chronic medical technologies, and very complex home care needs. Clinicians and families are often unprepared for their unique care needs. The current project designs targeted, innovative educational interventions to optimize patient well-being, empower family partners, and harness hospital resources.

Objective

Develop paired family and clinician CCI education interventions in the form of short videos delivered at three key clinical timepoints (Time of CCI diagnosis; Intrahospital transfer; Hospital discharge).

Methodology & Progress

We are creating and testing illustrated 5-minute videos for families and clinicians to distribute at the 3 clinical timepoints for pediatric inpatients with CCI.

Presentations

Coming soon!

Publications

Coming soon!

Core Team

Renee D. Boss, MD, MHS

Johns Hopkins School of Medicine, Johns Hopkins Berman Institute of Bioethics

Pamela K. Donohue, ScD, MS

Johns Hopkins School of Medicine, Johns Hopkins Bloomberg School of Public Health

Dorte Thorndike, MSN, RN

Johns Hopkins School of Nursing

Brandon Smith, MD

Johns Hopkins School of Medicine

Cecilia Kwak, MD

Johns Hopkins School of Medicine

Lora Batson

Johns Hopkins Bloomberg School of Public Health

Sara Munoz Blanco, MD

UT Southwestern School of Medicine

Vanessa Madrigal, MD

Children’s National Medical Center

Jenny Shepard, CRNP, MBA

Johns Hopkins School of Nursing