diplomsko delo
Manca Doles (Avtor), Darja Thaler (Recenzent), Martina Bizjak (Mentor), Andreja Vovk (Komentor)

Povzetek

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.

Ključne besede

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

Podatki

Jezik: Slovenski jezik
Leto izida:
Tipologija: 2.11 - Diplomsko delo
Organizacija: UL ZF - Zdravstvena fakulteta
Založnik: [M. Doles]
UDK: 616-083
COBISS: 109606403 Povezava se bo odprla v novem oknu
Št. ogledov: 106
Št. prenosov: 25
Ocena: 0 (0 glasov)
Metapodatki: JSON JSON-RDF JSON-LD TURTLE N-TRIPLES XML RDFA MICRODATA DC-XML DC-RDF RDF

Ostali podatki

Sekundarni jezik: Angleški jezik
Sekundarni naslov: Family of children with CHARGE syndrome
Sekundarni povzetek: 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.
Sekundarne ključne besede: diploma theses;nursing care;CHARGE syndrome;family centered care;healthcare workers;acceptance;experience;
Vrsta dela (COBISS): Diplomsko delo/naloga
Študijski program: 0
Konec prepovedi (OpenAIRE): 1970-01-01
Komentar na gradivo: Univ. v Ljubljani, Zdravstvena fak., Oddelek za zdravstveno nego
Strani: 26 str., [3] str. pril.
ID: 15446477