Abstract
To learn mothers' perceptions of the main care practices that are to be administered after their children's heart transplantation, as well as the main difficulties they experience. A descriptive qualitative study conducted in March and April 2014, using the focus group technique for data gathering. Participants were 12 mothers who were monitoring their children in a hospital that is a reference for treating cardiopulmonary diseases. Speeches were recorded, transcribed, and organized around the care practices that the mothers performed after the children's heart transplantations, the mothers' main difficulties, their perceptions of their children's quality of life, and the use of educational materials to disseminate post-transplantation care practices. For data analysis, we used the content analysis technique. The following were clarified: the schedule of immunosuppressive medication; food, environmental, and bodily and oral hygiene; the use of surgical masks; and keeping the children away from crowds. The study contributed to the situational diagnosis of the care administered by the mothers of transplanted children.
Highlights
Heart transplantation is a successful strategy for treating children with terminal cardiac insufficiency, enabling a longer survival and better quality of life
There should be emphasis on the care practices that will be required after transplantation, such as medication schedule, bodily hygiene, feeding, and precautions with the home environment, in addition to the numerous clinic appointments necessary after the procedure
We found no studies in the literature focusing on mothers’ perceptions of care practices after pediatric heart transplantation or even the main difficulties experienced when caring for children with transplants
Summary
Heart transplantation is a successful strategy for treating children with terminal cardiac insufficiency, enabling a longer survival and better quality of life. Children with cardiomyopathies since the neonatal period and congenital heart diseases with surgical corrections or not can benefit from heart transplantation. It is a therapeutic alternative when children have a life expectancy below two years and conservative therapies have been exhausted[2,3]. There should be emphasis on the care practices that will be required after transplantation, such as medication schedule, bodily hygiene, feeding, and precautions with the home environment, in addition to the numerous clinic appointments necessary after the procedure. We emphasize the need to implement educational actions during nursing appointments so that the mothers can manage their children’s care. Even if the mothers already take part in care[4], health education must cause behavior changes for the adoption of a healthy lifestyle
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