Children's Hospital Los Angeles
Approximately 3% of infants are born with significant defects at birth.  Children with more chronic and life-threatening conditions, spend a great deal of time admitted to intensive care units.  Children's Hospital Los Angeles wanted to understand how parents, whose children have a genetically based medical conduction experience intensive care units (ICU). This includes investigating systems that support decision-making, communication with providers, and access to information.  We conducted ethnographic observations in ICU's to view parent - provider interactions, and provider - patient interactions.  In the second phase of the engagement, we interviewed parents and health care providers.  Results have been used to improve hospital policies related to provider communication and environmental structures that improve access to information and support decision making for parents with children living with genetically based defects.