Rodzina – źródłem wsparcia w doświadczeniu rzadkiej choroby dziecka

Abstract

The topic of the article is the experience of social support for parents of children with rare genetic diseases. A child's disease changes the life of the whole family: the nature of marital relationships, relationships between siblings, strengthening ties or vice versa – weakening them. In the biographical studies of the parents of the sick child, I was interested in answering the questions: How does the situation of living with a child suffering from a rare genetic disease determine the marital life of their parents, in particular the mutual relations between them? Do and how do spouses support each other in the event of a child's illness? Does / how the child's siblings give support to his parents?