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Active Families Research Project
Active Families Research Program

Why are we doing this?

Many children born with heart problems can experience problems that, in some cases, may decrease their quality of life and the quality of life of their parents/caregivers. Families have told us about some of their concerns as we talk in clinic, but the purpose of this project was to ask about those concerns in a more formal way. Learning about the concerns and issues that children with heart defects face is the first step in trying to figure out how to help.

This project was also designed so that both parents and children could tell us about their concerns and what they would like to be different. We also expected that the priorities and concerns would change, depending on the age of the child or teen. For that reason, we had separate focus groups for parents of infants and children, tweens and teens and their parents.