Aim: The aim of this article is to describe experiences of parents who took care of a child with the Miller-Dieker syndrome. Methods: Describing the parents’ experiences was possible by analyzing content in a qualitative manner. The source of the research material was a blog written by a mother of a child with Miller-Dieker syndrome. The research was approached with an initial knowledge about what type of subjects it would be possible to identify in the text. Therefore, a list of main categories was compiled. After reading the contents of the blog several times more detailed categories were established which, in turn after receiving permission from the author of the blog, were illustrated with fragments of her statements. Results: On the basis of conducted analysis it was determined that the problems of parents of a child with a lethal defect are mostly connected with the functioning of the family. To battle those problems parents took actions, in a mental sense, which could be considered strategies. Furthermore, it has been proven that the presence of an ill child had a stimulating for the family when acquiring resources. It helped with personal development and social relations. This can be treated as an argument for a balanced approach when analysing the situation of parents with a terminally ill child, in which one should not negate the hardships connected with raising such a child but highlight the benefits of such a situation. Conclusions: The conducted analysis dealt with chosen aspects of the issue and was based on a case study. Therefore, it would be beneficial to perform further research with a bigger population.
Mar 18, 2021
Feb 21, 2020
|Wybrane psychopedagogiczne aspekty opieki i pielęgnowania dziecka z letalnym zespołem genetycznym||Mar 18, 2021|
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