“Life Goes On”1 – everyday life of children with Down syndrome and their families – selected aspects

J. Lipińska-Lokś
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Abstract

Abstract The birth of a child is a major event in family life, which makes parents take on an important role in their lives, characterised by new tasks, chief among which are the care and upbringing of their offspring. Unfortunately, in many families, some factors emerge that may affect their functioning, disrupt the course of family life, and leave a permanent mark on the family’s history. Such a situation can be difficult for many – and many parents find the process of accepting a child with a disability (Down syndrome) and themselves as parents of a child with Down syndrome a long and arduous journey, since taking care of a child, upbringing and supporting their development is an issue in itself, but also a challenge for parents. In many cases, both the child and their parents need support in their daily life, ensuring their high quality of life. The objective of this study is to outline the functioning of families of children with Down syndrome. Due to the complex nature of the issue at hand, only selected aspects of the functioning of families were diagnosed, showcasing the changes in the family life and its functioning as a result of the birth of children with Down syndrome. The study was based on qualitative methodologies, by analysing individual cases using interview technique and interview dispositions. The research group comprised 10 families of children with intellectual disabilities, and the interviewed group was made up of 10 mothers and 3 fathers in Zielona Góra.
“生活在继续”1 -唐氏综合症儿童及其家庭的日常生活-选择的方面
孩子的出生是家庭生活中的一件大事,这使得父母在他们的生活中承担了重要的角色,其特点是新的任务,其中主要是照顾和抚养他们的后代。不幸的是,在许多家庭中,出现了一些可能影响家庭功能的因素,扰乱了家庭生活的进程,并在家庭历史上留下了永久的印记。这种情况对许多人来说可能很困难,许多父母发现接受残疾儿童(唐氏综合症)和他们自己作为唐氏综合症儿童的父母的过程是一个漫长而艰苦的旅程,因为照顾孩子,抚养和支持他们的发展本身就是一个问题,但对父母来说也是一个挑战。在许多情况下,孩子和他们的父母在日常生活中都需要支持,以确保他们的高质量生活。这项研究的目的是概述唐氏综合症儿童家庭的功能。由于手头问题的复杂性,仅对家庭功能的选定方面进行了诊断,展示了唐氏综合症儿童出生后家庭生活及其功能的变化。该研究基于定性方法,通过使用访谈技巧和访谈倾向分析个案。研究小组由10个智障儿童家庭组成,访谈小组由10位母亲和3位父亲组成。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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