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

Family Videos

Family Video 1: Chronic Complex Illness

Family Video 2: Intrahospital Transfer

Family Video 3: Discharge from the Hospital

Additional Resources

Tips for Families (click here for printable pdf)

Getting ready for your new role
  • Inform your child’s pediatrician of the hospital stay and any changes in your child’s medical care
  • Make a binder detailing your child’s medical needs and care
  • Have a plan for health emergencies
  • Consider working with a case manager
Our whole family
  • Take care of your own health care needs
  • Your family, friends and community may be able to help: make a list of your needs and schedule to help people pitch in
Preparing for home
  • Nursing care will be different at home than in the hospital
  • Make space for your new equipment and supplies
  • Write all your questions down
Preparing to leave the hospital
  • Prepare a document with your child’s medical history and medications
  • Ask for written instructions for all equipment and medical devices
  • Families of children with similar medical needs can be a great resource and support