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Psychosocial aspects in the lives of children suffering from errors of metabolism
VÁVRŮ, Jana
The present bachelor´s thesis titled {\clq}qPsychosocial aspects in the lives of children suffering from errors of metabolism`` deals with the issues related to hereditary metabolic derangements. It puts together knowledge and examples from day-to-day lives of people suffering from hereditary metabolic disorders. The main purpose of the treatment and nursing care for patiens diagnose with hereditary metabolit errors is to help these accomplish ideal development in their childhoods and a maximum of independence, social integrity, and self-esteem in adolescence and adulthood. These goals can only be accomplished thanks to a multi-system approach. The theoretical part describes heredity, clinical symptoms, diagnostic methods, and treatment of hereditary metabolic disorders. It deals with phenylketonuria (PKU) in more details, it clarifies the mechanism of PKU origins, screening, symptoms, treatment, forecast, and also maternal phenylketonuria. The following part compiles known facts about the personality of a chronically ill child, its psychic needs, and social relations. It also deals with parents´ educational attitude, their strategies for coping with stressful situations, approach of the closest people and society as such. It gives an outline of psychic and social consequences of being chronically ill. The research part of the thesis includes qualitative survey employing case reports, personal documents analysis, and the method of guided interview. The target survey group comprised of 7 children aged 6 to 16 living in the south of Bohemia who are diagnosed with hereditary metabolic disorder, i.e. phenylketonuria. The target of the thesis was to find out about the way children diagnosed with hereditary metabolic disorder and their parents live, what most affects their lives, whether and how much they are informed about the disorder, and whether then disorder brought only negative things or also some positive ones. The survey questions concern the following: the metabolic disorder influences the life of the child, the disorder influences the whole family, and if the child follows properly given medical instructions, it can have a normal life like its healthy peers. The outcome of the thesis may be used as a basis for further improvements in complex care provided to children with metabolic disorders and their families.
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