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Communicating Down syndrome diagnosis to mothers at prenatal or/and postnatal stage

Lara Likar (2018) Communicating Down syndrome diagnosis to mothers at prenatal or/and postnatal stage. MSc thesis.

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    Down syndrome (DS) is one of the most common chromosomal disorders. It can be recognized in the prenatal or postnatal period. Even though the prenatal testing allows detecting the disorder before birth, majority of mothers only learn about their child’s diagnosis after the child is born. Informing the parents about DS diagnosis before or after birth is not an easy task for any professional worker. However, how the diagnosis is communicated / conveyed constitutes an important part of early intervention, as it affects how mothers and families experience the first information about their newly born child. Research shows that mothers assess the methods used by the health professionals to convey the diagnosis of DS as inefficient and often experience fear, anger or sadness in the process. In cases when the diagnosis is conveyed “in accordance with the pre-given instructions and guidelines” (such as conveying the diagnosis in partner’s or child’s presence, presenting the positive aspects and characteristics of the child with DS, using the appropriate terms, etc.), the mothers experience contentment and positive associations. The goal of this thesis is to determine how the mothers of children with DS describe the experience of learning the diagnosis already during pregnancy. The research focuses on the mothers’ experience and their assessment of the method doctors (or other health professionals) use to convey the diagnosis to them. It encompasses eighty-eight mothers with a child diagnosed with DS. Eighty-one of them learned about the diagnosis during the postnatal and only seven during the prenatal period. Results of the research show that negative emotions (fear, anxiety) accompany the acceptance of the diagnosis in both prenatal and postnatal periods. Dissatisfaction with how the diagnosis has been conveyed by the health professionals is often expressed; in these cases the positive aspects of characteristics of DS have not been stressed and have been overshadowed by the negative. When the guidelines, published Slovene and foreign scientific writings, have been observed when conveying the diagnosis, the experience is described as more positive. Mothers who learned about their diagnosis during prenatal period primarily stress the fact that the health professional tried influencing their decision on the continuation of pregnancy.

    Item Type: Thesis (MSc thesis)
    Keywords: Down syndrome, diagnosis, prenataln and postnatal diagnosis, famaly support, early intervention
    Number of Pages: 100
    Language of Content: Slovenian
    Mentor / Comentors:
    Mentor / ComentorsIDFunction
    doc. dr. Erna ŽgurMentor
    izr. prof. dr. Janez JermanComentor
    Link to COBISS: http://www.cobiss.si/scripts/cobiss?command=search&base=50126&select=(ID=12050249)
    Institution: University of Ljubljana
    Department: Faculty of Education
    Item ID: 5151
    Date Deposited: 12 Jul 2018 11:24
    Last Modified: 12 Jul 2018 11:24
    URI: http://pefprints.pef.uni-lj.si/id/eprint/5151

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