Mothers’ perceptions regarding the development of school-age children with severe congenital heart disease

Abstract

 To clarify mothers’ perceptions regarding the development of school-age children with severe congenital heart disease, we conducted semi-structured interviews of 12 mothers of school-age children with severe congenital heart disease and analyzed the interview results qualitatively and inductively. The mothers had concerns regarding social developmental delays, such as [communication problems], and issues related to physical development, such as [inadequate nutritional intake]. Additionally, they felt that developmental delays and imbalances were [improving] as a result of receiving support in school life. After being worried about and accepting developmental concerns, mothers’ perceptions changed to [being suited to children’s personality] and [expecting that children will be able to reach their potential]. People involved in supporting children with severe congenital heart disease should consult the parents when they are confused and notice the child’s developmental delay, and they should work together to figure out how to interact with the child based on a relationship of trust developed through continuous developmental follow-up.