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Specifics of nursing care for a patient with the disease Epidermolysis bullosa congenita.
ŠÍTALOVÁ, Terezie
This Bachelor's thesis is aimed at the specifics of the nursing caring of patients suffering from congenital epidermolysis bullosa (EB). The thesis is divided into two parts, theoretic and scientific. The theoretic part describes the diagnosis and therapy of the disease. The main focus of this section is on the nursing care. Particular focus is on eliciting the specifics of the nursing care of patients with congenital epidermolysis bullosa. Two questions are discussed: 1. What is the specific nursing care of the EB patient? 2. What are the nursing tasks in the treatment of the patient? Fact gathering was carried out with quantitative research, using the process of semi-structured interviews. The first research sample was compiled with three nurses who have had some experience with the nursing care of EB patients. The second research sample was compiled with some mothers whose children suffer from EB. The information gathered was processed in two schematics, consisting of 7 categories and 34 subcategories. The final scientific results led to the conclusion that the nursing care of the EB patient is very individual, with its main requirement being treatment of the damaged skin. The specifics of nursing care are focused on caring and preventing blisters and infections. Other nursing care duties basically include attention to newly formed blisters and injuries due to rubbing and scratching the fragile skin, nutrition, dealing with the patient's mental trauma, patient education to avoid scratching blisters, special communication with the patient, dealing with patient pain, explaining the main points of care during hospitalisation, and a focus on the problems of pseudosyndactyly. EB disease is a very rare, inherited and incurable disease. This Bachelor's thesis should be helpful to nurses, EB patients, parents caring for children with EB, and to the general public as well, with regard to obtaining more information about the disease of congenital epidermolysis bullosa.
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Integration of pupil with Epidermolysis bullosa dystrophica disease with special focus on physical education into the primary school education
Kepič, Roman ; Vařeková, Jitka (advisor) ; Daďová, Klára (referee)
Title: Integration of pupil with epidermolysis bullosa dystrophica disease with special focus on physical education into the primary school education. Objectives: The aim of this thesis is to point out possibilities of pupil's integration with corporal defect, concretely epidermolysis bullosa dystrophica into primary school education with special focus on Physical education through case study. Methods: We have used case study, questionnaire and interview methods because of uniqueness of occurrence this disease in primary school. The main case study is focused on pupil with EBD disease. The partial research is focused on classmates, teachers, teacher's assistant and girl's family. Results: Results have shown us the only partly possibility to integrate pupil with EBD disease into PE. The most suitable period of time was 1 - 3 school year. The research has shown girl's fitting in class and also her good feelings there. In generally we can say, that pupil is well perceived by classmates and teachers. There is very important teacher's and assistant's activity. The class teacher promoted positive, peaceful and friendly atmosphere since first year a thanks to her the class functions as a whole now. According classmates and teachers is schoolgirl fully integrated in class. The important is also teacher's...
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What is the life of patients with Epidermolysis bullosa in the Czech republic
Pazderová, Natálie ; Kotherová, Zuzana (advisor) ; Tomášková, Vladimíra (referee)
The diploma thesis is focused on the topic of Living with patients with rare diseases - Epidermolysis bullosa in the Czech Republic is focused on identifying the role of individual actors involved in financing support for patients and evaluating the significance of their roles. Patients suffering from rare diseases have a very specific situation in terms of financial contributions from the public budget, as their situation is not common. The diploma thesis is focused on the role of public sector actors, the non-profit sector (the role of Debra) and patient families in financing treatment and necessary care. It examines and compares the share of funding support for these individual actors, especially focusing on the share of funding from the public sector and the non-profit sector, where the majority is occupied by Debra, which focuses on supporting patients with butterfly wing disease. The thesis examines whether the role of the public sector in financing is sufficient and how significantly its role is complemented by the non-profit sector. Subsequently, the quality of life and social construction of patients in the Czech Republic is evaluated, as well as the provision of care and financial assistance for their illness. The situation of patients will be compared with the situation in other European...
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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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Integration of pupil with Epidermolysis bullosa dystrophica disease with special focus on physical education into the primary school education
Kepič, Roman ; Vařeková, Jitka (advisor) ; Daďová, Klára (referee)
Title: Integration of pupil with epidermolysis bullosa dystrophica disease with special focus on physical education into the primary school education. Objectives: The aim of this thesis is to point out possibilities of pupil's integration with corporal defect, concretely epidermolysis bullosa dystrophica into primary school education with special focus on Physical education through case study. Methods: We have used case study, questionnaire and interview methods because of uniqueness of occurrence this disease in primary school. The main case study is focused on pupil with EBD disease. The partial research is focused on classmates, teachers, teacher's assistant and girl's family. Results: Results have shown us the only partly possibility to integrate pupil with EBD disease into PE. The most suitable period of time was 1 - 3 school year. The research has shown girl's fitting in class and also her good feelings there. In generally we can say, that pupil is well perceived by classmates and teachers. There is very important teacher's and assistant's activity. The class teacher promoted positive, peaceful and friendly atmosphere since first year a thanks to her the class functions as a whole now. According classmates and teachers is schoolgirl fully integrated in class. The important is also teacher's...
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