Social Issues Affecting Families of Children with Congenital Heart Defects – Introduction and Research Postulates

Abstract

Abstract The functioning of children with congenital heart defects and their families in society is discussed rarely and too generally in the literature. Medical personnel, educators and caretakers have very little knowledge about this chronic disease and its prevalence. This lack of knowledge generates two extreme and undesirable attitudes: unjustified fear and negligence of the disease and its consequences. Both attitudes prevent a thorough understanding of the problem, in particular the aspects that influence the social life of children and their parents. As a result, the families of affected children are often left to their own devices, and they receive support only from other parents who are faced with the same problem or from non-governmental organizations. Educators, psychologists and sociologists should be encouraged to develop a cohesive support system based on reliable research results, and to implement measures that would enable young patients and their families to function better in society.