Information needs of families of children with a disability : the viewpoint of parents and health professionals

This preliminary study aimed at documenting the needs of families having a child with a disability concerning information, from the point of view of both parents and professionals involved with them. Three discussion groups were carried out : two with parents of children with Down's syndrome or cerebral palsy, and another group with health professionals involved with them. The results show that the parents are searching for information concerning the initial health problem, the available health care and other resources that might be of help. Sources of information for parents include the health care professionals, other parents within a similar situation, the media and the Internet. The obtained information influences the parents' adjustment over their child's health situation and also impacts the relationships they have with the health care team. Some recommendations regarding intervention are proposed.