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Kakovost življenja otroka s Sturge Weber sindromom : diplomsko delo
Pratengrazer Puncer, Rozalija (Author), Thaler, Darja (Mentor) More about this mentor... This link opens in a new window, Bizjak, Martina (Reviewer)

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Abstract
Uvod: Sturge Weber sindrom je redka nevrološka motnja, za katero je značilen pojav materinega znamenja. Znamenje je prisotno na obrazu; najznačilneje je, da poteka po obraznem živcu – po licu, pojavi se tudi na čelnem delu obraza ali veki, lahko pa tudi drugje po telesu. Sindrom nevrologi v sodelovanju z oftalmologi najprej diagnosticirajo na podlagi znamenja, kasneje s pojavom epileptičnih napadov ali bolezni oči. Za postavitev diagnoze si pomagajo z magnetno resonanco možganov, računalniško tomografijo možganov, snemanjem elektroencefalografije, kliničnim specialističnim pregledom nevrologa in/ali okulista. Simptomi so zaostanek v duševnem ter telesnem razvoju, epileptični napadi, bolezni oči. Namen: Namen diplomskega dela je opredelitev zdravstvene nege otrok s Sturge Weber sindromom; predstaviti želimo težave otrok in staršev ter načine lajšanja težav. V ospredje postavljamo ozaveščanje staršev otrok ter poti k izboljšanju ozaveščenosti. Z diplomskem delu želimo ugotoviti vlogo medicinske sestre pri obravnavi in zdravljenju otroka. Metode dela: Za metode dela smo izvedli deskriptivno metodo s pomočjo pregleda literature s področja zdravstvene nege otrok in SWS sindromom. Iskali smo po različnih računalniških podatkovnih bazah tako tuje kot slovenske literature. Informacije smo iskali tudi med stvarnim gradivom v knjižnicah. Rezultati: Sturge Weber sindrom je nevrološka motnja, ki je v večini primerov posledica okvare gena GNAQ. Zaradi vseh simptomov, s katerimi se soočajo skozi življenje, potrebujejo otroci svojstven in individualiziran pristop pri zdravstveni negi, diagnostiki ter zdravljenju. Pristop zdravstvene nege k otroku je v literaturi prikazan kot pomanjkljiv, oziroma so starši velikokrat prikrajšani za informacije, ki bi vplivale na kakovost življenja. Načini, s katerimi bi si starši lahko pomagali pri vzgoji, se med otrokovim razvojem, odraščanjem, spreminjajo. Pomembno je, da ga sprejmejo, spodbujajo, vključujejo v različne aktivnosti, se izobražujejo in navezujejo stike z otroku enakimi. Medicinska sestra ima pri spremljanju ter zdravljenju otroka pomembno vlogo, saj zmore njen pravilen pristop družini izboljšati kvaliteto življenja. Razprava in zaključek: Z upoštevanjem prevalence smo ugotovili, da je to redka nevrološka bolezen, ki prizadene otroke ob rojstvu, a v različnem obsegu glede na tip bolezni, kar se odslikava tudi na simptomih. Starši in otroci nimajo dovolj znanja in informacij za boljše življenje. Ugotovili smo, da so otroci zaradi spremenjenega zunanjega videza, nemalokrat označeni kot drugačni, kar pa v veliki meri vpliva na njihovo psihično doživljanje bolezni. Skozi pregledano literaturo smo ugotovili razsežnosti vloge medicinske sestre pri zdravljenju obravnavane bolezni.

Language:Slovenian
Keywords:diplomska dela, zdravstvena nega, Sturge weber sindrom, zdravstvena nega, otrok, terapevtska komunikacija
Work type:Bachelor thesis/paper (mb11)
Tipology:2.11 - Undergraduate Thesis
Organization:ZF - University College of Health Studies
Year:2021
Publisher:[R. Pratengrazer Puncer]
Number of pages:26 str.
Place:Ljubljana
UDC:616-083
COBISS.SI-ID:74647043 This link opens in a new window
Views:86
Downloads:9
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Secondary language

Language:English
Title:Quality of life of child with Sturge Weber syndrome : diploma work
Abstract:
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.

Keywords:diploma theses, nursing care, Sturge Weber syndrome, nursing, child, therapeutic communication

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