Mental health in mothers of Down Syndrome children

stressed mother

The small minority of women who elect to continue Down Syndrome pregnancies have vigorously asserted that the burden of raising a DS child has been exaggerated and that there would be fewer terminations if women were given more accurate information. However, the scientific research does not support those claims and, in fact, demonstrates the opposite.

Physical and Mental Health in Mothers of Children with Down Syndrome by Bourke, et al, was published in the Journal of Pediatrics in September 2008. It showed that mothers of DS children scored lower on measures of both physical and mental health. Indeed, mothers’ the decrease in physical and mental was closely associated with the functional level of the child.

According to the authors:

This study found that the most important predictors of maternal health, particularly mental health, were the child’s behavioral difficulties, the child’s level of everyday functioning, the child’s progress in community participation involving shopping and travel, and to a lesser degree, the child’s current health status…

We found that the mental health of mothers was strongly influenced by child behavior and care-giving demands. These results are similar to studies of psychological stress in caregivers of children with disability or chronic disease… [T]he average mental health score of the mothers in our study was significantly lower than the average score reported for both South Australia and Western Australia. Interestingly, the effect of care giving on maternal physical health appeared less dramatic…

In our multivariate analysis for maternal physical health we showed that mothers of children who scored higher on the disruptive/antisocial subscale of the DBC displayed worse physical health… Our study has corroborated earlier findings that behavior problems are the single most important child characteristic that predicts maternal psychological well-being…

Intellectual disability appears to predispose individuals to emotional or behavioral problems… Eisenhower et al showed at age 3, behavioral problems in children with Down syndrome are comparable to those of typically developing children. However, over the next 2 years there was a relative increase in behavior problems in their Down syndrome cohort and, in turn, maternal stress.

In our study, mothers of children with higher everyday functioning experienced better mental health. In particular, mothers reported better mental health if their children required no help or supervision in dressing, problem solving and, for children over 12 years, using the telephone. Similarly, mothers reported better mental health if their child aged over 12 years required supervision but no help in using the telephone, using public transportation, and attending social events…

These results are hardly surprising. A child’s disability has an impact on the mother’s physical and mental health and that impact is correlated with the child’s level of functioning. Instead of experiencing a DS child as “enriching,” mothers experienced the child as a significant stress, particularly if the child was low functioning. The authors did not investigate the impact of a DS child on marital happiness or the well being of other children in the family. However, it seems reasonable to assume that a stress large enough to impact both the physical and mental health of mothers is likely to have effects that extend to her roles as spouse and as parent to her other children.

None of this is an argument for termination. That is a decision that is and should be left to the mother. However, it is an argument for opposing the attempts of current DS parents to “educate” women facing the termination decision. Those parents who are anxious to “counsel” others are not representative of DS parents and therefore, could not possibly provide unbiased, accurate information.

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