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Nursing care for children with Epidermolysis Bullosa
 KOUTENSKÁ, Eva
This thesis is about the Epidermolysis Bullosa (EB) disease in children. It is a rare inborn blistery skin disease which is incurable as yet. In the Czech Republic the disease is called as "butterfly-wings disease" (in English it is known as the "butterfly children" disease) since patients' skin is as frail and vulnerable as a butterfly'swings. The goal of the thesis is to discover the specifics of the nursing care after the children with the EB disease who are in various stages of their growth and who have different extents of the disease. Next, the goal is to find the specifics of the nursing care after the children in terms of the blister placement. To reach the thesis's goal the author works with a qualitative research methods using a semi-structured interview and observation. The research questions are aimed at finding out he specifics of the nursing care after the children with the EB disease. The results of there search showed that blisters caused by the Epidermolysis bullosa require a specific care. The method of treatment varies according to where the blister sare created. When it comes to the child's age from the point of view of the nursing person, most nurses and mothers prefer to treat defects in older children because they are more co-operative in terms of maturity, but on the other hand, nurses and mothers agree that it is very individual and it cannot be judged unambiguously. The thesis brings new kinds of view on taking care of the children suffering from this rare and unpredictable disease and the ways of treating the wounds from there reason that the standard procedures, which are used correctly with other illnessesoracts, cannot be used with this disease.
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