Cerebral palsy and Down syndrome: level of parental knowledge and information

摘要

> size="2" face="Verdana, Arial, Helvetica, sans-serif">The study sought to identify and analyze research related to knowledge and information 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. Computerized data bases were used to collect information, using the following terms as key words: cerebral palsy, Down syndrome, knowledge and family. Fifty-seven studies were located from which 16 were selected; of these, seven were related to cerebral palsy, four to Down syndrome and five were related 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 parents 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 strategies which focused on broadening knowledge among family members about aspects related to Down syndrome. It was concluded that there is an urgent need to conduct research and develop actions that contribute to parents being better informed and more secure about their children's health care.