Paralisia cerebral e síndrome de Down: nível de conhecimento e informação dos pais

Abstract

The study sought to identify and ana- lyze research related to knowledge and informa- tion received by parents of children with cerebral palsy or Down syndrome about these disabilities. It involves a bibliographical revision limited to the period from 1996 through 2008. Computer- ized data bases were used to collect information, using the following terms as key words: cerebral palsy, Down syndrome, knowledge and family. Fif- ty-seven studies were located from which 16 were selected; of these, seven were related to cerebral palsy, four to Down syndrome and five were relat- ed to sundry deficiencies. The parents receive little information from the healthcare staff and clearly have many doubts about cerebral palsy and Down syndrome. This makes it very difficult for the par- ents to assist in the treatment of their children, as well as interfering in educational practices and decision-making. There is a need for educational actions to change this reality. Only one research project sought to implement educational strate- gies which focused on broadening knowledge among family members about aspects related to Down syndrome. It was concluded that there is an ur- gent need to conduct research and develop actions that contribute to parents being better informed and more secure about their children’s health care.