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Parents and teachers learning about and coping with the diagnosis of Pallister Killian syndrome emagistrsko delo

Anja Kuder (2022) Parents and teachers learning about and coping with the diagnosis of Pallister Killian syndrome emagistrsko delo. MSc thesis.

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    Abstract

    Pallister Killian syndrome is a rare genetic disorder. Little research has been conducted on this disorder, that is why only about 500 people in the world are diagnosed with Pallister-Killian syndrome, one of them in Slovenia. People with Pallister Killian syndrome have problems in all areas of functioning, overlapping with many other associated diseases. One of them is the intellectual function deficit that varies from mild to severe intellectual disabilities. The association of Pallister-Killian syndrome with autistic disorder is also common, which further hinders the already poorly developed speech. Due to distinct deficits in several areas, people with Pallister Killian syndrome attend programs in special education schools. Although Pallister Killian syndrome can be diagnosed before birth, it is very rare. Parents and children mostly wait a long time for a diagnosis. They need to visit various specialists because of other associated deficits. All this is stressful for the family, it affects its dynamics, the well-being of the family members and the frequent distress of parents. Once the specialists determine the child's diagnosis, it is important that it is conveyed to the parents in an appropriate, empathetic way, as the world changes for the parents when their child is diagnosed. The aim of the master thesis was to determine how teachers and parents first became acquainted with the diagnosis of the Pallister Killian syndrome and which are the key factors that affect the understanding it and coping with it. We wanted to disclose the forms of help that were offered to parents and teachers in the process of getting to know and dealing with the above-mentioned diagnosis. Teachers who teach children diagnosed with Pallister-Killian syndrome are usually special needs and rehabilitation teachers. They encounter children with this diagnosis at all stages of education; during early treatment and primary education as well as during all other phases of treatment which the children require. A high level of expertise in the characteristics of Pallister Killian syndrome, especially knowing the health specifics, and observing the child's performance can improve the quality of work with the children and their parents. A survey was conducted with the participants of the research with the aim of obtaining answers. These were later expanded with the help of an interview. A descriptive and a causal-non-experimental method of pedagogical research were used. A qualitative case study with a non-randomized sample was implemented. The survey showed that the diagnosis was communicated to the parents over the phone as well as in person later. This was performed when the girl was three years and a few months old. The two teachers were informed of the diagnosis when the girl was enrolled in a special education program. Neither parents nor teachers were offered systematic ways of help during the time familiarizing and dealing with the diagnosis, for example teacher education. The parents sought help in each other. The teachers received some answers to their questions from the girl's parents.

    Item Type: Thesis (MSc thesis)
    Keywords: Pallister Killian syndrome, learning about the diagnosis, coping with the diagnosis
    Number of Pages: 72
    Language of Content: Slovenian
    Mentor / Comentors:
    Mentor / ComentorsIDFunction
    doc. dr. Erna ŽgurMentor
    Link to COBISS: https://plus.si.cobiss.net/opac7/bib/peflj/113734147
    Institution: University of Ljubljana
    Department: Faculty of Education
    Item ID: 7247
    Date Deposited: 05 Jul 2022 10:03
    Last Modified: 05 Jul 2022 10:03
    URI: http://pefprints.pef.uni-lj.si/id/eprint/7247

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