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Quality of life of a child with a rare skin disease
KOUBOVÁ, Michaela
This diploma thesis deals with a rare skin condition called Ichthyosis which is, for the majority of the population, unknown. It is a rare genetic disease that is manifested via a different skin look and a bad bodily thermoregulation. The aim of this thesis is to map out the specific needs in the lives of children suffering from this disease and to point out the aspects of life quality for children thus diagnosed and their families, too. The theoretical part deals with the history, diagnosis, symptom description, the causes of origin as well as care for an individual suffering from this illness. To fulfil the aims of the practical part qualitative research was chosen in the design of a case study focused on a description of complex care and subjective understanding of quality of life in addressed individuals suffering from the given illness and their families.
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Ichthyosis - A disease of the whole family
Jílková, Karolína ; Pinková, Blanka (advisor) ; Přáda, Jan (referee)
Bachelor thesis entitled Ichthyosis - A disease of the whole family deals with the disease Ichthyosis, its types, heredity and quality of life of patients. The work is divided into a theoretical part and a practical part. In the theoretical part I present an individual types of diseases, possibilities of diagnostics, therapy and the influence on the labour of a mother of a child with this disease. In the practical part, I examine the period of the first signs of childhood disease, the impact on childbirth, the attitude of parents of a child with ichthyosis to plan another child and the degree of a daily burden for patients and their caregivers. I carry out the research in the form of a questionnaire sent out among the families whose members suffer from the given disease and a supplementary questionnaire, which was presented to the mothers of healthy children. The work is focused on greater public awareness of Ichthyosis, the necessary care of the skin of the affected and the non-infectiousness of this disease. The most popular products for relieving clinical symptoms are introduced in the attachment No. 3. keywords: ichthyosis, genetics, quality of the life, care, life, heredity, diagnostics, therapy, labour, prenatal
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Ichthyosis - A disease of the whole family
Jílková, Karolína ; Pinková, Blanka (advisor) ; Přáda, Jan (referee)
Bachelor thesis entitled Ichthyosis - A disease of the whole family deals with the disease Ichthyosis, its types, heredity and quality of life of patients. The work is divided into a theoretical part and a practical part. In the theoretical part I present an individual types of diseases, possibilities of diagnostics, therapy and the influence on the labour of a mother of a child with this disease. In the practical part, I examine the period of the first signs of childhood disease, the impact on childbirth, the attitude of parents of a child with ichthyosis to plan another child and the degree of a daily burden for patients and their caregivers. I carry out the research in the form of a questionnaire sent out among the families whose members suffer from the given disease and a supplementary questionnaire, which was presented to the mothers of healthy children. The work is focused on greater public awareness of Ichthyosis, the necessary care of the skin of the affected and the non-infectiousness of this disease. The most popular products for relieving clinical symptoms are introduced in the attachment No. 3. keywords: ichthyosis, genetics, quality of the life, care, life, heredity, diagnostics, therapy, labour, prenatal
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