Research into the needs of families who have children with Down syndrome (in the Slovak framework)

Objective: The objective of the research was to identify the current needs of parents who have children with Down syndrome (DS); needs which were not satisfied at the time when DS was diagnosed in the child, and to describe the nature of the relationship between the needs of parents who have children with DS and their quality of life. Methods: Two valid standardized scales were applied in the research: the Family Needs Survey (FNS) and the Family Quality of Life Scale (FQOL). The research sample consisted of 102 parents of children with DS. The obtained data were processed using content analysis of data and statistical data processing through SPSS. Results: The research shows that it was right after the birth of their DS child that parents felt they most lacked information and psychological assistance. As their children grew older, they needed more formal or informal support, financial assistance, engagement of their DS child in the educational process, and they also felt a shortage of time. At the same time, a strong factor with a positive impact on the needs of parents of DS children (U=448; p<0.05) and their quality of life (U=146; p<0.05) was the support of grandparents and self-help communities (alpha=52.78; p<0.05). The higher the quality of the parents life, the lower the needs in terms of family functioning (r(s)=-0.267; p>0.01), use of community services (r(s)=-0.278; p>0.01) or the necessity to acquaint the community with the child's disability (r(s)=-0.280; p>0.01). Conclusions: In order to satisfy the needs of families with DS children, formal and informal support is equally important. The types of support vary throughout the children's lives. Services provided to these families should not only be complex, but also coordinated and continuous.