Identifying children at high somatic risk: possible effects on the parents' views of the child's health and parents' relationship to the pediatric health services.

Abstract

Country-wide neonatal screening for alpha 1-antitrypsin deficiency (ATD) was discontinued due to clinical observations of negative psychological effects on the parents. In a subsequent systematic study, hypotheses of long-term negative effects on the parents' views of the child's health and on the parents' relationship to the pediatric services were tested by comparing these characteristics in parents with a child with ATD versus control parents, studied through interviews in the home. The identification of the ATD was found to have had negatively influenced the parents' view of the child's general health, but no evidence was found of increased parental anxiety regarding the child's current health or emotional dependence on medical personnel, of increased (reported) usage of pediatric services, or of more negative attitudes toward the pediatric services.