THE CHILDRENS HOSPITAL LOS ANGELES
This supplement application proposes to augment the RO3 Modern Genetic Testing in the Pediatric Critical Care Environment (Upperman, PI) awarded by the NICHD in July 2009. We propose to enhance data collection activities in Phase 1 to include focus groups and interviews with parents/surrogate decision-makers (SDM) of PICU patients during the patient’s admission. This expansion of data collection will provide a more comprehensive assessment of the variables that influence SDM attitudes towards genetic testing and decision- making in the critical care setting.
Throughout the development of our proposal we have consulted Dr. Bradley Freeman, an intensivist examining surrogate decision-making in adult ICUs. Our proposed additional data collection is supported by preliminary evidence emerging from the Co-Investigator’s (Iverson) qualitative study of SDM’s of adults in critical care (Freeman, PI, 1R01GM080591-01A2)(see letter of support in RO3 parent grant). The first phase of Freeman’s study engages SDMs in focus groups related to genetics and genetic testing and individual interviews related to SDM decision-making while their loved one is in critical care. From these discussions, there is emerging evidence that the circumstances related to the critical care experience (e.g., severity of condition, clarity of cause and outcome, length of time in the ICU and hospital) may have an impact on comfort with decision-making, trust in providers and understanding how to navigate the “system” in critical care to the obtain the information they need to feel comfortable with decisions being made about their loved one. This supplement request proposes using similar data collection techniques with parents while their child is in critical care. A deeper understanding of the connection between the context of making decisions in critical care and parents’ comfort, stress and trust related to making decisions will have implications to a parents’ receptivity to genetic testing of their child in the ICU and how best to support parents to make these decisions.