Improving Patient and Family Health Using Family-Centered Outcomes and Shared Decision-Making
Parents of a newborn/fetus diagnosed with a life threatening pediatric heart condition are faced with the stress of understanding a large amount of information about the diagnosis and treatment options. They often are required to make immediate and difficult choices about treatment options that will have long-lasting effects for their family. The goal of this study is to better understand how parents can be supported during this decision making process. Decision aids are web based tools that help communicate information to patients, help them understand their goals and values related to care, and teach them how to better interact with their providers. This study will develop and test how these decision aids improve parents' long-term mental health and the quality of their decisions in this situation.
