2020 Volume 29 Pages 34-41
The objective of this study was to elucidate the cognitive structure of parents with a child with congenital heart disease regarding what parents can do to enable the child to understand their illness and exhibit a positive attitude in their behavior. The subjects were 72 parents affiliated with four chapters of a patient advocacy group for children with congenital heart disease. A program for parents was implemented to strengthen the elements of resilience in patients with congenital heart disease that were identified in a previous study: an understanding of the illness by the child and a child’s ability to exhibit a positive attitude in their behavior. A questionnaire was then created based on the statements of the program participants. A factor analysis of the 41 valid responses showed that the child’s understanding of the illness consisted of three factors: parental support for independent self-care behavior by the child, the parents explaining the illness to the child, and the parents compensating for the child’s deficiencies in understanding and behavior. The child’s ability to exhibit a positive attitude in their behavior consisted of three factors: the parents showing a positive attitude toward the child, the parents acting in ways that showed they were conscious of the child’s autonomy, and respect for the child’s independence on the part of the parents. The results showed that the parents explained the illness in a way that enabled the child to view it positively and were conscious of the need to focus on the child’s autonomy.
