Introduction: Sturge Weber syndrome is a rare neurological disorder characterized by the appearance of a birthmark. The sign is present on the face, it is most characteristic that it runs along the facial nerve - on the cheek, it also appears on the frontal part of the face, or eyelids. It can also appear elsewhere on the body. The syndrome is diagnosed by neurologists in collaboration with ophthalmologists on the basis of the birthmark, later with the appearance of epileptic seizures or eye diseases. To make a diagnosis, they use magnetic resonance imaging of the brain, computered tomography of the brain, electroencephalography, clinical specialist examination by a neurologist and ophthalmologist. Symptoms include mental and physical retardation, epileptic seizures, and eye diseases. Purpose: The purpose of this thesis work is to define the nursing care of children with Sturge Weber syndrome, we want to present the problems of children and parents, and at the same time ways to alleviate them. The purpose is to raise awareness of parents of children, and to present possible proposals for improving awareness. With the thesis work we want to determine the role of the nurse in the treatment and treatment of the child. Methods of work: For the methods of work, we performed a descriptive method with the help of a review of the literature in the field of child health care and SWS syndrome. We searched various computer databases of both, foreign and Slovenian literature.. We also searched physically in libraries. Results: Sturge Weber syndrome is a neurological disorder that in most cases results from a defect in the GNAQ gene. Children’s need a unique and individual approach to nursing, diagnosis and treatment, because of all the symptoms they face throughout life. The approach of nursing to the child’s is shown in the literature as deficient, or parents are often deprived of information that would affect the quality of life. The ways in which parents can help themselves in their upbringing are changing, depending on their development and growing up. It is important to accept him, encourage him, involve him in various activities, educate him and establish contacts with the child’s the same. The nurse plays an important role in monitoring and treating the child’s, because her correct approach can improve the family's quality of life. Discussion and conclusion: We found that, given its prevalence, it is a rare neurological disease that affects children at birth differently depending on the type of disease, which is also reflected in the symptoms. Parents and children do not have enough knowledge and information for a better life. We found that children are often labeled as different due to their changed appearance, which greatly affects their psychological experience of the disease. Through the reviewed literature, we determined the dimensions of the role of the nurse in the treatment of these.
|