magistrsko delo
Zala Caserman (Author), Erna Žgur (Mentor)

Abstract

Trisomija 21, bolje poznana kot Downov sindrom, je najpogostejša kromosomska mutacija z incidenco 1/800 živorojenih otrok. Anomalija na 21 kromosomu pri posameznikih z Downovim sindromom vpliva na upočasnjen duševni in telesni razvoj. Odkrivanje Downovega sindroma je z razvojem na področju presejalnega in diagnostičnega testiranja možno že v prenatalnem obdobju. Soočanje staršev z diagnozo otroka lahko predstavlja zahtevno življenjsko preizkušnjo. Občutki sreče ob rojstvu otroka se lahko prepletajo z občutki skrbi in negotovosti. Večina staršev ima za svojega otroka visoka pričakovanja; predstavljajo si podobo zdravega otroka z visokimi ambicijami in sanjami, ki pa se z novico o diagnozi v trenutku razblinijo. Starši so po prejetju diagnoze običajno čustveno nestabilni in ranljivi. Pogosto jih spremljajo občutki žalosti in zaskrbljenosti, prepleteni z občutki krivde in sramu. Čustveni odzivi so po prejetju informacije o diagnozi intenzivnejši, a se sčasoma zmanjšujejo. Proces sprejemanja in prilagajanja na otrokovo stanje se med družinami razlikuje in je odvisen od več dejavnikov, kot so osebnost, prejeta podpora, življenjske izkušnje, ter odnos do življenja. V magistrskem delu smo želeli ugotoviti, kako se starši soočajo z diagnozo trisomija 21. Raziskava je izvedena na podlagi študije primera dveh parov staršev otrok z diagnozo trisomija 21. S starši smo izvedli polstrukturiran intervju. Želeli smo izvedeti, kdaj in na kakšen način so starši prejeli informacijo o diagnozi otroka. Prav tako smo želeli izvedeti, kako so se starši soočali z diagnozo, kako je spoprijemanje z diagnozo vplivalo na partnerski odnos. Zanimala nas je tudi nudena podpora in pomoč ter možnost pogovora s strokovnjaki. Uporabili smo deskriptivno metodo ter kavzalno neeksperimentalno metodo pedagoškega raziskovanja. Ugotovili smo, da so starši v obeh primerih za diagnozo otroka izvedeli v postnatalnem obdobju. Vsi starši so sprva doživeli šok, spremljali so jih tudi občutki strahu, krivde, zanikanja in nevere. Oba para staršev sta poročala o negativnih izkušnjah odnosa zdravnikov. Poročali so o odnosu brez sočutja in empatije, o »smrtno« resni in hladni predaji informacije. Ob prejemu diagnoze noben par staršev ni vedel, kaj diagnoza pomeni zanje in za njihovega otroka. Ugotovili smo, da so starši večinoma samoiniciativno iskali informacije o diagnozi. Izpostavili so velik pomen drugih staršev otrok s trisomijo 21. Oba para staršev sta poudarila medsebojno podporo v procesu prilagajanja na diagnozo ter na novo dinamiko v družini.

Keywords

trisomija 21;diagnoza;soočanje staršev;spoprijemanje z diagnozo;

Data

Language: Slovenian
Year of publishing:
Typology: 2.09 - Master's Thesis
Organization: UL PEF - Faculty of Education
Publisher: [Z. Caserman]
UDC: 616.899.6-055.52(043.2)
COBISS: 237172227 Link will open in a new window
Views: 20
Downloads: 4
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Other data

Secondary language: English
Secondary title: Parental coping with a Trisomy 21 diagnosis
Secondary abstract: Trisomy 21, better known as Down syndrome, is the most common chromosomal mutation with an incidence of 1/800 live births. The anomaly on chromosome 21 in individuals with Down syndrome affects delayed mental and physical development. Developments in screening and diagnostic testing allow for the possible detection of Down syndrome during the prenatal period. For parents, facing a child's diagnosis can be a challenging life trial. The feelings of happiness upon the birth of a child can be intertwined with feelings of worry and uncertainty. Most parents have high expectations for their child, envisioning a healthy child, with high ambitions and dreams, which are immediately shattered upon receiving the diagnosis. Parents are usually emotionally unstable and vulnerable after receiving the diagnosis. They are often accompanied by feelings of sadness and anxiety, intertwined with feelings of guilt and shame. Emotional responses to the diagnosis are more intense initially but tend to decrease over time. The process of acceptance and adaptation to the child's condition varies between families and depends on several factors, such as personality, support received, life experiences and attitude towards life. In this master's thesis, we aimed to find out how parents cope with the diagnosis of trisomy 21. The research was conducted based on a case study of two pairs of parents of children diagnosed with trisomy 21. We conducted a semi-structured interview with the parents. We wanted to find out when and how parents received information about the child's diagnosis. We also wanted to understand how parents coped with the diagnosis and how coping with the diagnosis affected their relationship. Additionally, we were interested in the support and assistance provided and the possibility of consulting with professionals. We used a descriptive method and a causal non-experimental method of pedagogical research. We found that in both cases parents found out about the child's diagnosis postnatally. All parents initially experienced shock, accompanied by feelings of fear, guilt, denial and disbelief. Both pairs of parents reported negative experiences with the medical workers. They spoke of a lack of compassion and empathy, and a "deadly" serious and cold delivery of the information. After receiving the diagnosis, neither pair of parents knew what the diagnosis meant for them and their child. We found that parents mostly sought information about the diagnosis on their own initiative. They emphasized the importance of other parents of children with trisomy 21. Both pairs of parents highlighted mutual support in the process of adapting to the diagnosis and the new dynamics within the family.
Secondary keywords: Down syndrome;trisomy 21;diagnosis;parents' coping;dealing with the diagnosis;Downov sindrom;Starši otrok s posebnimi potrebami;Univerzitetna in visokošolska dela;
Type (COBISS): Master's thesis/paper
Study programme: 0
Embargo end date (OpenAIRE): 1970-01-01
Thesis comment: Univ. v Ljubljani, Pedagoška fak., Specialna in rehabilitacijska pedagogika
Pages: 1 spletni vir (1 datoteka PDF (56 str.))
ID: 26430838