The process of disease information provided by mothers to their children with congenital heart disease until school age

Abstract

 This study aimed to describe the process of disease information from mothers to their children with a congenital heart disease until school age. A semi-structured interview was conducted with 4 mothers of children with congenital heart disease aged 10-12 years. We transcribed the interviews verbatim and analyzed the transcripts using Steps for Coding and Theorization (SCAT). Mothers were informed about the disease by the attending physician since their children’s infancy and gathered information by themselves. However, mothers’ improvement in medical knowledge was gradual and intermittent; even if their children reached school age, mothers obtained only an imperfect understanding and persisting in acquiring such information was difficult. The factors of this finding were “inhibition of understanding due to the shock that child had congenital heart disease”, “condition of inadequate improvement in understanding”, and “the situation in which it is difficult to build a trusting relationship with the attending physician”. The mothers moved from providing “information centering on daily life contents” to “information with which the contents of daily life and imperfect medical knowledge coexisted” until children reached school age. Additionally, we clarified factors of information selection that increase and expand with child’s growth. Improvement in mothers’ medical knowledge and support for using the information based on factors of its selection and mothers’ needs is required.