Specific aspects of nursing care of a child with hemophilia.

This thesis deals with care nursing for children with haemophilia. Haemophilia is a bleeding disorder that is classified as congenital coagulopathy. In the Czech Republic there are about 780 hemophiliacs, about 230 of them are hemophiliacs aged 0-18 years. Bleeding episodes are caused by the lack or the complete absence of one of coagulation factors VIII, IX and XI, each of which plays an important role in the process of coagulation and its deficiency or complete absence interferes with the clotting cascade. In the theoretical part, the classification of haemophilia according to types and stages, all types of the disease manifestations, the distinctive inheritance pattern of the disease, which causes the disease occurrence only in boys, are mentioned. From a nursing perspective, this thesis deals with psychological and social problems in these patients, the specific needs of haemophilia patients and the resulting specific nursing care. The thesis also presents a very specific haemophilia treatment according to the most modern methods and the comparison of approaches and treatment of hemophilia with other states. To conduct the practical part of this qualitative study, a quantitative survey was used, which was divided into two parts and was carried out in the period from January to April 2011. The aim was to determine how the cooperation between medical institutions and families of children with hemophilia is materialized. The research survey was carried out by using anonymous non-standardized interviews with four families with a child suffering from haemophilia and two nurses caring for heamophylic patients. Another objective was to identify the specifics of nursing care for a child with haemophilia. To meet this objective, anonymous standardized interviews with four nurses working in the children's ward of haematooncology were conducted and questionnaires for nurses and students of non medical fields were used. 12 nurses and 49 students took part in the questionnaire survey. The information received from the questionnaires has been processed into graphs. In the practical part of this thesis it has been identified how the cooperation between a medical facility and a family with a child who suffers from haemophilia works, the importance of a good approach taken by professional medical personnel especially in the early stages, when a family is confronted with the disease the first time, is referred to, and it has been found out that the health care workers´ approach influences the disease acceptance. Specific features of nursing care for a child with haemophilia have been identified, the most specific is considered dealing with coagulation factors preparates that are used to treat the disease. It includes dilution and the subsequent intravenous administration of the preparate, but also the hemophiliac´s family education on this issue. Structured education in this area contributes to the quality improvement of the life of haemophyliacs and their families so that the patients could be shifted to home treatment. The results of this thesis may contribute to the improvement of nursing care for children with haemophilia. The practical outcome is a booklet designed for children with haemophilia which can be used to teaching how to dilute coagulation factors preparates and the subsequent self-administration of the preparates