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Am J Med Genet A. 2010 Sep;152A(9):2193-202. doi: 10.1002/ajmg.a.33605.

Long-term parental psychological distress among parents of children with a malformation--a prospective longitudinal study.

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Department of Pediatrics, Sørlandet Hospital, Arendal, Norway.


We previously reported that prenatal diagnosis of malformations is associated with increased parental psychological distress after birth compared to distress in parents with postnatal diagnosis. We have now extended our earlier study to include a long-term follow-up of mothers and fathers 9 years after birth. Psychological responses were measured by General Health Questionnaire (GHQ-28), State Anxiety Inventory (STAI-X1), and Impact of Event Scale (IES) in 118 mothers and 100 fathers of 124 children with malformations 0-7 days (T1), 6 weeks (T2), 6 months (T3), and 9 years postpartum (T4). At T4 we observed no significant differences in psychological responses comparing parents with and without prenatal foreknowledge of their child's malformation. At T4 30.2% and 27.8% of the parents reported clinically important psychological distress and clinically important state anxiety, respectively. Intrusive stress decreased from T1 to T3, but increased significantly from T3 to T4. At T4 25.6% of the parents reported severe intrusive stress, with a higher proportion among mothers than fathers (32.8% vs. 17.2%, P = 0.029). In the multivariate analysis, unemployment predicted clinically important psychological distress at T4, whereas, clinically important state anxiety at T4 was predicted by low educational level. This study shows that prenatal diagnosis is associated with significantly increased psychological distress in the acute postnatal phase. However, there was no long-term increase in psychological distress among parents with prenatal foreknowledge of their child's malformation. The significantly increased intrusive stress at 9-year follow-up might reflect long-term challenges related to having a child with a malformation.

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