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Parental experience of children with trisomy 13

Klara Slokar (2020) Parental experience of children with trisomy 13. MSc thesis.

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    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.

    Item Type: Thesis (MSc thesis)
    Keywords: diagnosis, trisomy 13, parents, confrontation, experience
    Number of Pages: 99
    Language of Content: Slovenian
    Mentor / Comentors:
    Mentor / ComentorsIDFunction
    doc. dr. Erna ŽgurMentor
    Link to COBISS: https://plus.si.cobiss.net/opac7/bib/peflj/12831561
    Institution: University of Ljubljana
    Department: Faculty of Education
    Item ID: 6190
    Date Deposited: 07 Apr 2020 11:51
    Last Modified: 07 Apr 2020 11:51
    URI: http://pefprints.pef.uni-lj.si/id/eprint/6190

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