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

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Abstract
ABSTRACT– The parents of 61 children at high somatic risk due to α1‐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.