diplomsko delo
Sabina Krnc (Author), Mojca Lipec-Stopar (Mentor)

Abstract

Ena izmed najpogosteje prepoznanih motenj v duševnem razvoju je trisomija 21, ki jo imenujemo tudi downov sindrom (v nadaljevanju DS). Ker imajo otroci z DS nekatere skupne telesne značilnosti, se diagnoza oz. sum na diagnozo običajno postavi že kmalu po rojstvu, ko sta otrok in mati še v porodnišnici. Strokovnjaki, ki sporočajo staršem novico o otrokovih motnjah v razvoju, opravljajo pomembno nalogo. Starši imajo svoja pričakovanja o tem, kako naj bi v nastali situaciji strokovnjaki komunicirali. Prav tako imajo tudi predstave o informacijah, ki naj bi jih v teh trenutkih prejeli. V teoretičnem delu diplomskega dela smo opisali nekatere značilnosti oseb z DS, faze sprejemanja otrokove drugačnosti in ključne elemente zgodnje obravnave ter komunikacije med starši in strokovnjaki. V empiričnem delu smo naredili raziskavo, v katero smo vključili 8 staršev otrok z DS. Zanimalo nas je njihovo zadovoljstvo z načinom na katerega jim je bila podana otrokova diagnoza ter pomočjo, ki so je bili deležni v prvih dneh in tednih življenja z otrokom. Naš namen je bil na podlagi dobljenih informacij oblikovati ustrezna priporočila za podajanje informacij o otrokovih razvojnih motnjah ter za pomoč v prvih dneh in tednih življenja z otrokom. Izkazalo se je, da imajo starši nekatera skupna, pa tudi različna pričakovanja, zato ne obstaja le ena rešitev, kako jim zagotoviti čim lažji in čim hitrejši prehod preko začetnega šoka do sprejetja otrokove drugačnosti. Opazili smo, da v splošnem starši novico o otrokovi drugačnosti lažje sprejmejo, če jim je ta sporočena v mirnem in zasebnem prostoru, če sta prisotna oba starša, če novico sporoči zdravnik in je njegov odnos spoštljiv ter ima dovolj časa za odgovarjanje na vprašanja, informacije pa podaja na način, da jih starši razumejo. Nadalje si starši želijo časa zase, pa tudi možnosti nadaljnjih pogovorov s strokovnjaki, stikov z drugimi starši, ki so se znašli v podobni situaciji ter kvalitetno in čim hitrejšo zgodnjo obravnavo otroka in celotne družine. Na podlagi ugotovitev smo pripravili priporočila za strokovnjake, ki se srečujejo s starši otrok z DS v prvem obdobju po otrokovem rojstvu. Priporočila so povzeta po različnih virih ter dopolnjena s spoznanji naše raziskave. V prilogi je tudi zgibanka, namenjena družinam, v katero se je ravnokar rodil otrok z DS ali pa tistim staršem, ki potrebujejo spodbudo sredi vsakdanjih preizkušenj. V zgibanki so zbrane spodbudne misli staršev, otrok z DS, namenjene drugim staršem.

Keywords

sporočanje diagnoze;sprejemanje drugačnosti;komunikacija;

Data

Language: Slovenian
Year of publishing:
Typology: 2.11 - Undergraduate Thesis
Organization: UL PEF - Faculty of Education
Publisher: [S. Krnc]
UDC: 376(043.2)
COBISS: 10610761 Link will open in a new window
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Downloads: 12
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Other data

Secondary language: English
Secondary title: Support for families of children with Down syndrome within the early intervention phase
Secondary abstract: One of the most commonly recognized intellectual disabilities is trisomy 21, also known as Down's syndrome (hereafter DS). Since children with DS have some distinguishing physical characteristics, diagnosis is usually established soon after birth when the child and the mother are still in the hospital. The task of breaking the news about children's disabilities to parents is very important. Parents have expectations about how experts should communicate in such sensitive situations. Furthermore, they also have expectations about the information they should receive in these moments. In the theoretical part of the thesis we describe some of the characteristics of people with DS and discuss the stages of parental acceptance of the fact that their child is different. We also discuss the key elements of early intervention and proper communication between parents and doctors. In the empirical part we provide a study in which we included 8 parents of children with DS. We were interested in their feedback about the manner in which the child's diagnosis have been reported to them, and the assistance they received in the first days and weeks of their child's life. Based on the received information our intention was to create recommendations for experts about proper communication when providing information on children's developmental disorders to the parents, and to properly assist them in the early days and weeks of their life with a child. We realized that parents have certain common expectations, as well as various different expectations among each other, so there is no unique solution on how to guide them through a passage of an initial shock to the acceptance of their child as easy and smoothly as possible. In general we noticed that it is easier for parents to accept the news of the child's diagnosis if it is reported in a quiet and private area, if both parents can be present, and if the diagnosis is communicated from the doctor in a respectful attitude with enough time at hand to answer any questions. Also, information should not be given in a too-scientific way, so that parents can understand them. Furthermore, in such situations parents need time for themselves, additional possibilities of further discussions with experts, as well as contacts with other parents who have found themselves in a similar situation. Finally, parents need a professional and quick early intervention of their child and the entire family. Based on the findings we prepared recommendations for professionals who encounter parents of children with DS immediately after childbirth. The recommendations are taken from different sources and supplemented by findings of our research. In the appendix there is also a leaflet for families in which a newborn child was just diagnosed with DS or for parents that need encouragement while facing related live challenges. In the leaflet, among other things, one can find a collection of inspiring thoughts from parents of children with DS intended to empower other parents of children with DS.
Secondary keywords: backward child;family;otrok s posebnimi potrebami;družina;
File type: application/pdf
Type (COBISS): Undergraduate thesis
Thesis comment: Univ. Ljubljana, Pedagoška fak., Specialna in rehabilitacijska pedagogika
Pages: XII, 157 str.
ID: 26531808