Psychological distress of parents of children with spina bifida

Parents of children with spina bifida suffer from more psychological distress than parents of able-bodied children. Research published in the open access journal BMC Pediatrics reveals that having a child with spina bifida (SB) has a negative effect on parents' psychological well-being.

Ignace Vermaes and colleagues from Radboud University in Nijmegen, The Netherlands, looked at 15 published research reports that studied the level of psychological distress of parents of children with SB, compared with that of parents of able-bodied children. They carried out a statistical analysis of the data published in these studies and found that the presence of SB in the family has a negative effect on parents' psychological 'adjustment' - the ability to cope with upsetting feelings aroused by the illness of the child. The average amount of psychological distress was 0.73 standard deviations higher for mothers of children with SB than for mothers of able-bodied children, described by researchers as a "medium to large" effect size. For fathers it was 0.5 a standard deviation higher, a more moderate but still significant effect. This difference in effect size between mothers and fathers might reflect the division of tasks between partners - mothers tend to be the primary caregivers and are therefore more likely to be exposed to everyday care strains involved with SB. The effect of the condition on mothers was more heterogeneous than the effect on fathers, possibly because mothers' occupational lives are more likely to vary than those of fathers.

The authors conclude that "the presence of SB in families predicts higher levels of psychological strain in parents. The heterogeneity of the effect for mothers however also indicated that SB does not necessarily provoke psychopathology in all parents."

Spina bifida is a very severe, and the second most common, congenital birth defect. The results of this study indicate that spina bifida health care should include psychological support to parents of children with the condition, to help them cope with the care of their child at different stages of life and ensure the well-being of the whole family.