title: Psychological consequences of neonatal screening for alpha 1-antitrypsin deficiency. Parental reactions to the first news of their infants' deficiency.
abstract: Medical record information and retrospective parental reports at interview indicated that the 61 families were typically first contacted about the child's alpha 1-antitrypsin deficiency (ATD) during its first 6 months of life, when a physician called the mother on the telephone and told her at least something about the child's ATD. Most parents felt they had received unclear or inadequate information. A majority initially conceived of ATD as representing an imminent, serious danger to the child's health. Most of the mothers (78%) and many of the fathers (58%) reported having immediately had negative emotional reactions, most often worry, anxiety and fear. These reactions were often long-lasting and, in mothers, typically strong.
mesh_terms: D000328:Adult; D001294:Attitude to Health; D003955:Diagnostic Tests, Routine; D004644:Emotions; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D011368:Professional-Family Relations; D012306:Risk; D013548:Sweden; D019896:alpha 1-Antitrypsin Deficiency