Soočanje staršev z diagnozo trisomija 13

Slokar, Klara (author), Žgur, Erna (mentor)

Starši lahko ob rojstvu otroka s posebnimi potrebami poleg veselja doživljajo tudi stisko. Trisomija 13 poleg resnih intelektualnih primanjkljajev in telesnih razvojnih nepravilnosti prinaša s sabo še številne druge zaplete. Prognoza za te otroke je manj ugodna, življenjska doba pa v povprečju krajša od enega leta starosti. Zaradi pomanjkljivih metod na področju prenatalne diagnostike se tega sindroma v večini primerov ne odkrije pred rojstvom. Ker je prognoza za te otroke slabša, se morajo starši poleg soočanja z dejstvom, da ima otrok posebne potrebe, soočiti še z dejstvom, da bo otrok po vsej verjetnosti kmalu umrl. Tu igra veliko vlogo tudi medicinsko osebje, ki pogosto nima dovolj posluha za starše ob sporočanju diagnoze in le-te ne sporoči na empatičen način. Z magistrskim delom smo želeli ugotoviti, kako se starši spopadajo z rojstvom otroka s trisomijo 13, zato smo v sklopu le-tega s tremi starši otrok s trisomijo 13 izvedli intervju. Želeli smo ugotoviti, kako so se intervjuvani starši soočali z diagnozo ter kako je potekal celoten proces soočenja. Z otroki s trisomijo 13 se specialni in rehabilitacijski pedagogi srečujemo znotraj zgodnje obravnave in tudi kasneje v predšolskem in šolskem obdobju. Dober vpogled v značilnosti in funkcioniranje teh otrok lahko pomembno prispeva h kakovostnejšemu delu z njimi in z njihovimi starši. Uporabili smo deskriptivno ter kavzalno neeksperimentalno metodo pedagoškega raziskovanja. Raziskava je pokazala, da so vsi starši za diagnozo trisomija 13 izvedeli postnatalno od zdravnika, takrat pa so vsi tudi prvič slišali za to diagnozo. Pri tem so imeli vsi tudi negativne izkušnje z zdravstvenim osebjem, ki ni imelo dovolj empatije in posluha zanje. Vsi so najprej doživeli tudi šok, vendar pa niso imeli težav s soočanjem z diagnozo, saj so vsi hitro sprejeli dejstvo o otrokovem stanju. Otroka sta bila v okolje pozitivno sprejeta, prav tako se tudi niso spremenili odnosi z bližnjimi, odnos med partnerjema pa se je po mnenju vseh izboljšal. Vsi so imeli tudi težave pri povezovanju s starši otrok z isto diagnozo, saj je teh zelo malo, prav tako pa niso dobili veliko informacij in pomoči s strani zdravnikov, zato so si morali pomagati sami, predvsem z iskanjem informacij na spletu.

• Language: Slovenian
• Keywords: diagnoza
• Work type: Master's thesis/paper
• Typology: 2.09 - Master's Thesis
• Organization: PEF - Faculty of Education
• Year: 2020
• PID: 20.500.12556/RUL-115005
• COBISS.SI-ID: 12831561
• Publication date in RUL: 21.04.2020

Secondary language

• Language: English
• Title: Parental experience of children with trisomy 13

Abstract

When a child with special needs is born, parents can simultaneously face happiness and anguish. Trisomy 13 is a condition associated with severe intellectual disability as well as developmental physical abnormalities and plenty of other impediments. Due to an unfavourable prognosis, infants diagnosed with trisomy 13 are averagely not expected to live past their first year. As a consequence of insufficient prenatal diagnostic methods, in most cases, the condition is not identified before a child is born. Thus, parents not only face the fact that their child has special needs but also get the news that he or she will most certainly die shortly after birth. The medical workers play a crucial role in the process of confrontation, but often do not possess enough empathy when delivering the diagnosis to the parents. The MA thesis deals with the parents of children diagnosed with trisomy 13 and their confrontation with the aforementioned medical condition. We have interviewed three parents of children with trisomy 13 and asked them about their reactions upon receiving the diagnosis and their process of confrontation. Special and rehabilitation pedagogues are there for children with trisomy 13 from the early treatments to pre-school and school encounters later on. A good insight into the key features and the functioning of these children can enhance the quality of work with the children and their parents. We used the descriptive and the causal non-experimental method of the pedagogic research. The research showed that all the children were diagnosed with trisomy 13 postnatally. The parents were informed about the condition by their doctors, and this was the first time the parents have heard about trisomy 13. They all had negative experiences with the medical workers who did not deal with their struggles emphatically. They all experienced a shock, but they did not struggle to accept the diagnosis, as they quickly came to terms with their children’s conditions. The children were born into a positive environment, and the relations with the people close to the family did not change in any way. All of the interviewed agree that the relationship between the two parents improved. However, they all struggled to find other families experiencing the same medical conditions, because of the rarity of the disease and the lack of information or help given by their doctors. They had to find the information about trisomy 13 by themselves – most frequently on the Web.

• Keywords: diagnosis