OBJECTIVE: To assess parental burden and grief one year after having a child with a congenital anomaly. METHOD: Twenty-five couples completed the Impact on Family Scale (IFS) and 22 couples answered the Perinatal Grief Scale (PGS). In addition, 27 mothers completed the Functional Health Status Scale (FSII-R). RESULTS: Mothers and fathers showed no significant differences in overall burden (IFS) and grief (PGS). Regarding the subscales, mothers reported significantly more personal strain. Foreknowledge from prenatal diagnosis about the anomaly, a low perceived functional health status of the child, and multiple congenital anomalies increased the burden and grief. CONCLUSIONS: A perinatal counseling team that provides clear and consistent information about the anomalies, the treatment, and the prognosis would help to reduce unnecessary stress and uncertainty, particularly for parents who received prenatal information and whose infant has multiple congenital anomalies.

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Journal of Pediatric Psychology
Erasmus MC: University Medical Center Rotterdam