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Nursing care about child with glycogen storage disease I. type
ŠŤASTNÍKOVÁ, Hana
Abstract Present Situation: Research investigation deals with nursing care of the child with glycogen storage disease type I., as well as its diagnosis, nutritional management and complications. Glycogen storage disease (GSD) belongs among rare hereditary metabolic disorders. There are several types of GSD, divided into hepatic, myopathic and generalized forms. Early diagnosis is essential for effective treatment of the disease, the signs and symptoms of which first appear in babies soon after birth. The aim of this thesis was to describe the nursing care of the child with glycogen storage disease type I and identify the problems parents of affected children have to face. Methodology: Quantitative research method was used for empirical part of the thesis. The data collection was carried out through In-depth interviews with paediatric-ward nurses and a mother of the child with GSD type I. All interviews were audio recorded, transcribed and coded using paper-and-pencil method and finally categorized. The research sample consisted of nine paediatric-ward nurses and the mother taking care of the child with glycogen storage disease type I, also known as Gierke's disease. Selection of the sample was purposive and its size was determined by theoretical saturation of data. Results: Nursing care of children with glycogenosis type I requires regular feedings of a special diet enriched with corn starch substances to maintain the level of glycemia in the physiological range and to avoid dangerous hypoglycaemia. Problems for nursing staff mainly involve the unstable health condition of a child, fluctuating glycemia levels and limited knowledge of the disease. Parents not only worry about potential health complications of their child but they are also concerned about technical problems with feeding aids, poor recognition of hypoglycaemia and the child's mental welfare. The disease presents increased physical and emotional demands on the patient and their family. Conclusions and recommendations for practice: The thesis presents an outlook on the issue of paediatric-ward nursing care of the child with glycogen storage disease type I and indicates the common problems of the family with a child affected by the disease. The effort was to thoroughly understand the nature of the disease and to identify basic nursing care procedures which can benefit nurses in other facilities dealing with the same diagnosis. The results of the research will be presented in the magazine "Pediatrie pro praxi" in the nursing section.
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