Identifying children at high somatic risk: parents’ long‐term emotional adjustment to their children's alpha₁ antitrypsin deficiency

The parents of 61 children at high somatic risk due to alpha 1 antitrypsin deficiency (ATD) were followed-up 5-7 years after the identification of the ATD and studied regarding their long-term emotional adjustment to the child's ATD. This was assessed both by a physician who interviewed the parents in their home and independently by a psychologist who systematically scored selected parts of the interview transcripts for specified variables. Notable agreement was found in the separate assessments performed by these two researchers. At follow-up, 58% of the mothers and 44% of the fathers had predominantly negative feelings (worry, guilt) about the child's ATD. About half of the mothers and a third of the fathers were judged to have poor long-term emotional adjustment. Considerable continuity was found in mothers' feelings across the 5-7 years since identification of the ATD.