diplomsko delo
Manca Doles (Author), Darja Thaler (Reviewer), Martina Bizjak (Mentor), Andreja Vovk (Co-mentor)

Abstract

Uvod: CHARGE-sindrom je redka genetska okvara, ki je posledica mutacije gena in prizadene več organov v telesu. Otroka, rojenega s tem sindromom, čaka dolgotrajno zdravljenje, številne operacije in posledično tudi dolgotrajne hospitalizacije. Potrebna je individualna obravnava otroka in njegove družine z multidisciplinarnim timom. Pri obravnavi je treba upoštevati smernice v družino usmerjene skrbi. Otrok s CHARGE-sindromom je pri življenjskih aktivnostih doživljenjsko odvisen od pomoči družine. Namen: Namen diplomskega dela je opisati družino otroka s CHARGE-sindromom. Cilj diplomskega dela je na podlagi intervjuja z mamo otroka, ki ima CHARGE-sindrom, opisati CHARGE-sindrom in življenje družine. Metode dela: V diplomskem delu je uporabljena deskriptivna metoda dela s pregledom literature v angleškem in slovenskem jeziku in prikaz primera. Primer je prikazan s pomočjo intervjuja, pri tem je uporabljen polstrukturiran vprašalnik. Razprava in zaključek: CHARGE-sindrom je stanje, ki ga povzroči mutacija gena CHD7. Otrok, rojen s tem sindromom, preživi v bolnišnici veliko časa, saj potrebuje številne kirurške posege in multidisciplinarno obravnavo. Pri obravnavi otroka je pomembna v družino usmerjena skrb, ki temelji na zaupanju med družino in zdravstvenimi delavci. Za družino otroka s CHARGE-sindromom je življenje stresno in naporno, zato družina potrebuje psihosocialno pomoč.

Keywords

diplomska dela;zdravstvena nega;CHARGE-sindrom;v družino usmerjena skrb;zdravstveni delavci;sprejemanje;doživljanje;

Data

Language: Slovenian
Year of publishing:
Typology: 2.11 - Undergraduate Thesis
Organization: UL ZF - University College of Health Studies
Publisher: [M. Doles]
UDC: 616-083
COBISS: 109606403 Link will open in a new window
Views: 106
Downloads: 25
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Other data

Secondary language: English
Secondary title: Family of children with CHARGE syndrome
Secondary abstract: Introduction: CHARGE syndrome is a rare genetic defect caused by a mutation in a gene that affects several organs in the body. A child born with this will receive long-term treatment for long-term surgery syndrome and, consequently, permanent hospitalization. Individual treatment of the child and his family with a multidisciplinary team is needed. The instructions in family-oriented care should be followed during the treatment. A child with CHARGE syndrome is lifelong dependent on the help of his family. Objective: The purpose of this thesis is to describe the family of a child with CHARGE syndrome. The purpose of the diploma work is to describe CHARGE syndrome and family life on the basis of interviews with the mother of a child with CHARGE syndrome. Methods used: The diploma thesis uses a descriptive method of work with a review of literature in English and Slovenian and a case study. The example is presented with the help of an interview, using a semi-structured questionnaire. Discussion and conclusion: CHARGE syndrome is a condition caused by a mutation in the CHD7 gene. A child born with this syndrome spends a lot of time in hospitals in need of surgery and multidisciplinary treatment. Family care based on trust between the family and healthcare professionals is important when treating a child. For a family of children with CHARGE syndrome, life is stressful and stressful, so the family needs psychosocial help.
Secondary keywords: diploma theses;nursing care;CHARGE syndrome;family centered care;healthcare workers;acceptance;experience;
Type (COBISS): Bachelor thesis/paper
Study programme: 0
Embargo end date (OpenAIRE): 1970-01-01
Thesis comment: Univ. v Ljubljani, Zdravstvena fak., Oddelek za zdravstveno nego
Pages: 26 str., [3] str. pril.
ID: 15446477