Adaptation to the birth of a child with a congenital anomaly: A prospective longitudinal study of maternal well-being and psychological distress.

Abstract

This study explores the stability and change in maternal life satisfaction and psychological distress following the birth of a child with a congenital anomaly using 5 assessments from the Norwegian Mother and Child Cohort Study collected from Pregnancy Week 17 to 36 months postpartum. Participating mothers were divided into those having infants with (a) Down syndrome (DS; n = 114), (b) cleft lip/palate (CLP; n = 179), and (c) no disability (ND; n = 99,122). Responses on the Satisfaction With Life Scale and a short version of the Hopkins Symptom Checklist were analyzed using structural equation modeling, including latent growth curves. Satisfaction and distress levels were highly diverse in the sample, but fairly stable over time (retest correlations: .47-.68). However, the birth of a child with DS was associated with a rapid decrease in maternal life satisfaction and a corresponding increase in psychological distress observed between pregnancy and 6 months postpartum. The unique effects from DS on changes in satisfaction (Cohen's d = -.66) and distress (Cohen's d = .60) remained stable. Higher distress and lower life satisfaction at later assessments appeared to reflect a persistent burden that was already experienced 6 months after birth. CLP had a temporary impact (Cohen's d = .29) on maternal distress at 6 months. However, the overall trajectories did not differ between CLP and ND mothers. In sum, the birth of a child with DS influences maternal psychological distress and life satisfaction throughout the toddler period, whereas a curable condition like CLP has only a minor temporary effect on maternal psychological distress.

Maternal psychological responses during pregnancy after ultrasonographic detection of structural fetal anomalies: A prospective longitudinal observational study

“…This is similar to the finding of stable psychological stress levels in pregnancies without fetal anomaly, reported by Nes et al [4] Contrary to the results in our comparison group, a British study found an increase in depression and anxiety from gestational week 18 to 32, [20] whereas an Australian study described a decline in stress and anxiety scores from week 16 to week 28, followed by an increase until week 32. [21] Moreover, Liou et al [22] reported a decrease in stress and increase in anxiety levels during pregnancy, and also found a transient elevation of depressive symptoms from week 25 to 29.…”

“…In a Norwegian population-based study by Nes et al, a reduction of maternal psychological distress was found, from week 18 to week 30, in pregnancies with a fetal anomaly—notably the authors did not specify whether the women were aware of the fetal anomaly before the birth. [4]…”

“…[3] High levels of anxiety, as measured by Spielberger’s State Anxiety Inventory, were present in the second trimester, then transiently decreased and finally increased in the last month before term (37 weeks). Nes et al [4] conducted a population-based epidemiological study but restricted their report to Down syndrome and cleft lip and/or palate. Questionnaire data (a short version of Hopkins Symptoms Checklist 25-item) collected at recruitment (17−18 weeks) and week 30 showed that women carrying an abnormal fetus had moderate levels of distress that was stable (Down syndrome) or decreasing (cleft lip and/or palate) in the third trimester compared to women carrying a normal fetus.…”

Long-time sickness absence among parents of pre-school children with cerebral palsy, spina bifida and down syndrome: a longitudinal study

“…It is possible that the between-group differences in parental sick leave patterns observed herein may have changed when the child was older. For example, previous research indicated that stress among parents of children with Down syndrome increased over time [12, 29]. Second, the sample size of the spina bifida and cerebral palsy groups was rather small.…”

“…As shown earlier, the challenges parents face and how they handle these may differ according to the nature of the child’s disability [3, 11, 12]. The type of special needs, including the level of care the child requires, may give rise to distinct parental challenges and have different effects on parental health and sickness absence.…”