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Soočanje staršev s prirojeno srčno napako otroka : magistrsko delo
ID Cverle, Aleša (Avtor), ID Žgur, Erna (Mentor) Več o mentorju... Povezava se odpre v novem oknu

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Izvleček
Prirojene srčne napake so najpogostejša prirojena obolenja, ki se pojavljajo pri 1 % vseh novorojenčkov. V Sloveniji ta številka predstavlja 80⠒100 otrok letno, kar pomeni, da se z diagnozo prirojene srčne napake vsako leto sooča 160⠒200 staršev. Ker so prirojene srčne napake lahko tudi nezdružljive z življenjem, je za starše ta izkušnja zelo stresna. Obstaja ogromno različnih vrst srčnih napak, ki so diagnosticirane z različnimi preiskavami. Dojenčki s prirojeno srčno napako v 50 % potrebujejo takojšnje kirurško zdravljenje, zaradi česar so lahko dolgotrajno hospitalizirani, njihovi starši pa od njih ločeni. V tem obdobju imajo ogromno invazivnih in neinvazivnih preiskav, srčna napaka pa se ob ustrezni preiskavi lahko odkrije in potrdi že med nosečnostjo. Porod otroka s prirojeno srčno napako se v tem primeru načrtuje v porodnišnici v Ljubljani, kjer ima otrok na voljo takojšnjo ustrezno intervencijo in zdravljenje. Vsak otrok se na prirojeno srčno napako odziva drugače, bodisi kaže značilne simptome bodisi je otrok asimptomatski. Vsekakor pa otroci, ki potrebujejo zdravljenje srčne napake v prvem letu življenja, potrebujejo tudi posebno nego in varstvo, njihovi starši pa konkretne in kakovostne informacije o prirojeni srčni napaki, vplivu napake na otrokovo nadaljnje življenje in razvoj, te informacije pa morajo priti od strokovnih delavcev, ki so vključeni v zdravljenje otroka. V magistrskem delu želimo ugotoviti, kako se starši soočajo z diagnozo prirojena srčna napaka otroka. V raziskavo smo vključili deset staršev otrok s prirojeno srčno napako, katerih otroci so bili v prvem letu življenja operirani na srcu. Izmed desetih izbranih staršev je šest staršev za diagnozo izvedelo med nosečnostjo, štirje pa v prvih štiriindvajsetih urah po porodu. V raziskavi sta uporabljeni deskriptivna in kavzalno neeksperimentalna metoda pedagoškega raziskovanja. Izvedli smo kvalitativno študijo primera z neslučajnostnim namenskih vzorcem. Otroci izbranih staršev so imeli različno število posegov, vse od enega pa do štirih, hospitalizirani so bili različno dolgo, od minimalno dveh dni do skoraj meseca dni. Ugotovili smo, da starši ob soočanju z diagnozo sprva doživijo šok, saj je prirojena srčna napaka otroka nekaj, česar niso pričakovali. Začetnemu šoku sledijo različni občutki, kot so žalost, jeza, občutek krivde, zanikanje diagnoze, zaprtje vase ali takojšen odziv in iskanje informacij ter pogovori z drugimi osebami, ki so zdravstveno podkovani ali pa tudi ne, vseeno pa nudijo oporo in pomoč staršem. Starši se v težkih trenutkih mentalno umikajo iz situacije, obračajo k veri in molijo, jočejo ter tudi pogovarjajo s partnerji. Tako kot je vsak otrok s prirojeno srčno napako drugačen in poseben, tako je drugačen in poseben tudi odziv vsakega starša na soočanje z diagnozo. Raziskava je pokazala, da je celotna izkušnja na starših pustila posledice na njihovem duševnem zdravju. Starši so lahko do otrok s prirojeno srčno napako bolj zaščitniški, bojijo se raznih bolezni, ki lahko stanje poslabšajo, zato poskušajo otroke pred tem obvarovati. Ugotovili smo tudi, da si starši nikoli niso želeli smrti otroka in nikoli niso mislili, da bi bilo bolje, da bi otrok umrl. Starši otroka s prirojeno srčno napako sprejemajo v popolnosti in nanj ne gledajo kot na otroka, ki ima zdravstvene posebnosti, le te odmislijo. Z raziskavo smo ugotovili, da se starši v težkih trenutkih največkrat poslužujejo pogovorov s svojimi partnerji in iskanja informacij drugje (na raznih spletnih straneh), obrnejo se tudi na društvo S srcem za srčke, ki je v Sloveniji edino delujoče društvo za pomoč in podporo staršem otrok s prirojenimi srčnimi napakami.

Jezik:Slovenski jezik
Ključne besede:prirojena srčna napaka, otrok s prirojeno srčno napako, soočanje, starši, duševno zdravje, sprejemanje
Vrsta gradiva:Magistrsko delo/naloga
Tipologija:2.09 - Magistrsko delo
Organizacija:PEF - Pedagoška fakulteta
Kraj izida:Ljubljana
Založnik:A. Cverle
Leto izida:2024
Št. strani:IX, 86 str.
PID:20.500.12556/RUL-155334 Povezava se odpre v novem oknu
UDK:616.12(043.2)
DOI:20.500.12556/RUL-155334 Povezava se odpre v novem oknu
COBISS.SI-ID:190818307 Povezava se odpre v novem oknu
Datum objave v RUL:27.03.2024
Število ogledov:885
Število prenosov:490
Metapodatki:XML DC-XML DC-RDF
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Sekundarni jezik

Jezik:Angleški jezik
Naslov:Parents Coping with their Child's Congenital Heart Disease
Izvleček:
Congenital heart diseases are the most common congenital disorders, occurring in 1% of all newborns. In Slovenia, this number represents 80-100 children annually, meaning that 160-200 parents face the diagnosis of a congenital heart disease each year. Since congenital heart diseases can also be life-threatening, this experience is very stressful for parents. There are numerous types of heart diseases. Infants with a congenital heart disease require immediate surgical treatment in 50% of cases, which can lead to prolonged hospitalization and separation from their parents. During this period, they undergo numerous invasive and non-invasive tests. The heart disease can be detected and confirmed during pregnancy with appropriate testing. The birth of a child with a congenital heart disease is therefore planned at the maternity hospital in Ljubljana, where the child has access to immediate appropriate intervention and treatment. As there are different children with congenital heart diseases, there are different cases. Each child responds differently to a congenital heart disease, either showing characteristic symptoms or being asymptomatic. However, children who require treatment for a heart disease in the first year of life also need special care and attention, and their parents require specific and quality information about the congenital heart disease, its impact on the child's future life and development. This information must come from professionals involved in the child's treatment. In this master's thesis, we aim to determine how parents cope with the diagnosis of their child's congenital heart disease. We included ten parents of children with congenital heart diseases, whose children underwent heart surgery in the first year of life, in the study. Of the ten selected parents, six learned about the diagnosis during pregnancy, while four learned within the first twenty-four hours after birth. The research used a descriptive and causal non-experimental method of educational research. We conducted a qualitative case study with a purposive non-random sample. The children of the selected parents underwent varying numbers of procedures, ranging from one to three, and were hospitalized for different lengths of time, from two days to just under a month. We found that parents initially experience shock when facing the diagnosis. This is something they did not expect. The initial shock is followed by various feelings such as sadness, anger, guilt, denial of the diagnosis, withdrawal, or immediate response and seeking information, as well as conversations with others who are either knowledgeable about health or not. Parents mentally withdraw from the situation in difficult moments, turn to faith and pray, cry, and also talk to their partners. Just as every child with a congenital heart disease is different and unique, so is the response of each parent to coping with the diagnosis. The study showed that the entire experience left consequences on the parents' mental health. Parents tend to be more protective of children with congenital heart diseases, fearing various illnesses that could worsen the condition, so they try to protect their children from them. We also found that parents never wished for the death of their child and never thought it would be better if the child died. Parenst completely accept child with congenital heart disease and do not wiev him as a child with health issues; they simply overlook them. Through the research, we found that parents most often resort to conversations with their partners and seeking information elsewhere. They also turn to the association "S srcem za srčke," which is a Slovenian organization providing help and support to parents of children with congenital heart diseases.

Ključne besede:congenital heart disease, child with congenital heart disease, coping, parents, mental health, acceptance

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