2021 Volume 30 Pages 156-165
This study aimed to describe the process of information perception regarding disease explanation in mothers with children until school age who had congenital heart disease and to clarify the methods for medical professionals to provide support. A semi-structured interview was conducted with six mothers of children with congenital heart disease aged 10-12 years. We transcribed the interviews verbatim, and the Steps for Coding and Theorization (SCAT) method was used to analyze them. The results showed that in order to transform the mothers’ information perception from “inadequate understanding” to “enabling the implementation of an explanation”, three processes need to be implemented. These were identified as “recognition of necessity”, “improvement of understanding”, and “establishment of a method after trial and error”. To recognize necessity, it is essential to understand what information each mother and child consider important and add the perspective of medical professionals where needed. Furthermore, “improvement of understanding” must be balanced with “recognition of necessity”, and it is required be prepared to conveying information to the child at any time, in case of a demand. In addition, for “establishment of a method after trial and error”, even though the opportunities of contact are limited, it is necessary to provide resources according to individual needs, while paying attention to the mother-child relationship.
