Rosa Armengol is the Director of AACIC, the Congenital Heart Defects Association of Catalonia. The association was founded in 1994, from the conversations shared between the families and relatives that had patients in the pediatric intensive care units.
In our conversation with Rosa, she explained a bit about the research the association does, related to the psychological, emotional, and educational impact that congenital heart diseases have on patients and families. For the families, she says, there are three critical moments; the diagnosis before birth, when the family unit has to accept their new reality; after the birth of the infant, because often the babies need to undergo long periods of hospitalization or invasive medical procedures; and after the first years, when expectations have to be adjusted to the clinical needs of the patients.
Rosa underlines the importance of explaining the projects. As she points out, families need to see that research has a direct impact on their lives.