Sprejemanje otroka z Downovim sindromom s strani svojcev : diplomsko delo

Kezele, Ines (author), Lebar, Cecilija (mentor)

Uvod: Downov sindrom je kromosomska motnja, ki se pojavlja približno v razmerju 1 : 700. V normalnem deljenju celic je 21. kromosom prisoten dvojno, pri Downovem sindromu pa trojno. Otroci z DS rastejo in se razvijajo počasneje kot ostali otroci. Namen: Namen diplomskega dela je bil raziskati proces sprejemanja svojcev otroka z DS. Metode dela: Uporabljena je bila kvalitativna metoda – s petimi svojci otroka z DS je bil izveden poglobljeni intervju. Rezultati: Ko govorimo o občutkih in mislih ob prejemu informacije, da je deklica rojena z DS, prevladujejo strah in negotovost (dan so opisali kot grozen, poln spraševanja – zakaj se je to zgodilo ravno njim), potrtost, žalost ter zmedenost. Soočajo se z različnimi strahovi – kako bo z deklico, ko bo odrasla, kako bo v šoli. Vsem sodelujočim v raziskavi je bila v največjo oporo družina. Kot pozitivne strani svojci navajajo srečo, ki jo občutijo ob otrokovem napredku, veliko ljubezen do njega, da jim je prinesel veselje in optimizem, smeh ter radost. Proces sprejemanja deklice je pri osebah različno potekal. Nekateri so potrebovali več časa (nekaj mesecev), drugi par dni, ena oseba je navedla, da je to takoj sprejela. V procesu sprejemanja je bilo prisotno tudi spraševanje o smislu dogodka. Razdelimo ga na tri faze: začetni šok, soočanje z dejstvom, sprejemanje. Razprava in zaključek: Proces sprejemanja otroka je pri sodelujočih trajal različno dolgo. Ena oseba je dejstvo sprejela takoj, a se še vedno zgodi, da o tem dogodku razmišlja in si postavlja vprašanja. Oče je za sprejem potreboval nekaj dni, toda o tem več ne premišljuje. Ostale osebe so potrebovale več časa – nekaj tednov oz. mesecev. V proces sprejemanja sodi premišljevanje o smislu dogodka, ki so ga spremljali strah, negotovost, zaskrbljenost. Postavljeni cilji ene izmed oseb so bili: sprejeti otroka, pogosto se družiti, pomagati družini in medsebojno sodelovati. Pomagalo je tudi povezovanje z drugimi starši, informiranje o teh otrocih, dodatne izkušnje in pridobivanje znanja. Proces sprejemanja otroka lahko torej opišemo kot krivuljo, ki narašča in pada in je sestavljena iz dobrih in slabih dni.

• Language: Slovenian
• Keywords: otrok z Downovim sindromom, družina, sprejemanje, kvalitativna raziskava
• Work type: Bachelor thesis/paper
• Organization: ZF - Faculty of Health Sciences
• Year: 2019
• PID: 20.500.12556/RUL-113225
• COBISS.SI-ID: 5752939
• Publication date in RUL: 14.12.2019

Secondary language

• Language: English
• Title: Accepting a child with Down syndrome by relatives : diploma work

Abstract

Introduction: Down syndrome is chromosomal disorder that occurs approximately in the ratio of 1: 700. In each body cell, three copies of the 21st chromosome occur instead of two. Children with Down syndrome grow and develop more slowly than other children. Purpose: The purpose of the diploma work is to research the process of relatives accepting a child with Down syndrome. Methods of work: A qualitative method was used - an in-depth interview was conducted with five relatives of a child with Down syndrome. Results: Fear and uncertainty are the prevailing feelings and thoughts when hearing that a girl is born with DS (they described the day as horrifying, full of questions – why it happened to them), devastation, sadness, and confusion. They face various fears – what will happen to her when she grows up and how hard school would be for her. All participants of the survey stated that they received the most support from their family. Their happiness when seeing how the child progresses, their love, the optimism they have received from the child, as well as laughter and joy, were listed as some of the positive sides of their experience. People accepted the girl differently. Some needed more time (several months), others a couple of days. One person stated they accepted her immediately. Questions about the meaning of the event were present in the process of acceptance. We divide it into three phases: initial shock, facing the fact, acceptance. Discussion and conclusion: The process of accepting the child was different for each person involved. One of them accepted the fact immediately, but they often still think about the event and ask themselves questions about it. The father needed several days to accept what happened, but he does not think about it anymore. Others needed more time – several weeks or even months. The process of acceptance includes thinking about the meaning of the event, which was accompanied by fear, uncertainty, and worry. One person's goals were: to accept the child, to socialize frequently, to help the family, and to cooperate with one another. Connecting with other parents helped, as well as informing about these children, additional experiences, and gaining knowledge. The process of accepting the child can be described as a curve that rises and falls and consists of good and bad days.

• Keywords: children with Down syndrome, family, acceptance, qualitative research