Abstract
This study is a randomized clinical trial where participants (parents of a fetus or neonate
diagnosed with a life-threatening congenital heart disease (CHD)) will randomly be assigned
to either receiving a web-based decision aid (DA) alone, or receiving the decision aid that
includes a values clarification exercise. Because of the novel use of decision aids in CHD in
an acute setting, we will also compare participants receiving the DA in a randomized control
trial to a prospective observational population of families faced with similar decisions
without a DA (control group). We have designated the Brief Symptom Inventory Global Severity
Index of Global Distress 3 months post-birth or death/termination as our primary outcome
measure.
