Who is Who
The Scientific Advisory Board: Rosa Armengol
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.
How did you become involved in the SAB of TinyBrains?
Rosa Armengol. We work closely with the Sant Joan de Déu Hospital. We have an emotional and psychological support program for families and patients. So, we are very close to the professionals working there, especially with Dr. Joan Sánchez de Toledo since he became the Head of the Pediatric Cardiology Department. He was the one who told us about the project and invited us to become a member of the advisory board.
One of the things that the project proposes is the non-invasive monitoring of newborn babies. How important is the non-invasive part?
R.A. Everything that softens the visual impact, that families have when the baby is born and has to be admitted in the intensive care units, will help them bond more naturally. In the mind of anyone expecting a child, they don’t imagine the baby with cables or tubes or anything, so if the visual impact is reduced, it will help the families.
What is the perception of the families about the research that is going on in the area?
R.A. About the research that we do in the association? Every time we start a project, we always communicate its commencement – on social media, etc. Of course, the participants of our projects are much better informed than the others. With respect to the scientific research, honestly, we receive little information. We have a database of more than 6000 people… but we don’t usually receive information from research centres about the research that is being conducted and how it is progressing.
How important do you think is explaining scientific research to families? Having more information about the ongoing research improves the view of these conditions?
R.A. Well, I think that if people have information about what is being done for a situation that they are living with every day, it helps them feel that they are not alone, that many groups worry about improving the situation their kids are going through. Informing people to show that science is working to improve these conditions and their impact, I think is positive. We have spaces where people can share their experiences, and all of them say the same. They wish that no other family should have to experience what they’ve been through.
Are scientists and clinicians invited to these spaces for interchanging experiences?
R.A. Yes, of course! We have a Scientific Board, so the members of the board, together with other collaborators, and doctors, are involved and participate in our dedicated sessions. Although we are not clinicians, we are trained and have experience in several fields where congenital heart diseases impact daily – such as psychology, education, physiotherapy. These spaces are monthly sessions, and we invite lots of different professionals.
The AACIC offers a wide range of support, guidance and activities for families with sons and daughters who have congenital heart diseases, including academic and professional guidance, physical activity and therapy, camps for children and pedagogical services.
For more information, please visit AACIC.