Wsparcie społeczne rodziców i ich dzieci z zespołem Downa w biegu życia jednostki. Implikacje dla praktyki

Abstract

The family has always been the most authentic living and upbringing environment of an individual and simultaneously a link between the private and public life. It is in the family – as an unmatched social group – that homo familiaris has always been an individually treated subject, regardless of the sex, age or the psychophysical state, including a child with Down syndrome who will probably require a lifelong care and support of third parties, especially of parents and guardians who are devoted and always ready for sacrifices. A family raising a child with Down syndrome – as evident from numerous studies and research results – is the most competent expert, an objective and simultaneously critical discussion partner. The article – generally speaking – is devoted to people burdened with the diagnosis of the Down syndrome and to their families, particularly the parents who provide their children with lifelong support and use that support themselves by sharing their observations, experiences and considerations with me. Common contacts, exchange of ideas, important observations, considerations and conclusions constitute the content of the article whose aim was to show that people with Down syndrome as well as their parents and siblings require different types of social support on various stages of their lives. The empirical material was collected by means of interviews and observations of the lives of families with children with Down syndrome at different stages of their lives. The following questionnaires were used: the scale of the social functioning of a child with Down syndrome and of the social support of families (developed by the author) and a questionnaire of the orientational grading scale of the family environment prepared by J. Konopnicki and M. Ziemba. The data collected did not provide an unambiguous answer to the question: if and to what extent does the social support of children suffering from Down syndrome and their parents depends, inter alia, on the development stage of a child and the level of the abilities and skills acquired in the field of individual and social functioning. The data, however, led to some theoretical and pragmatic findings.