Are Indian Parents of Children with Down Syndrome Engaged in the Blame Game?

To study blame ascription among parents of children with Down syndrome and to study its correlation with sociodemographic factors, parental perception of dysmorphisms and parents’ knowledge about Down syndrome. This is a prospective, observational, non-interventional case control study.

Interview of biological parents of children with Down syndrome less than 12 y of age was taken. Dysmorphism and parents’ feeling of blame was assessed and graded by Likert’s scale. Controls were parents of age and gender matched children with non-genetic chronic disorders.

During the study period, 50 mothers and 46 fathers of cases and 50 control parents were interviewed. Parents in the study group were older; the mothers were better educated and had more frequent antenatal visits. There was no significant difference in the proportion of parents counseled but genetic counseling was associated with a significantly higher proportion of parents having knowledge about Down syndrome. A higher proportion of parents perceived their child with Down syndrome being dysmorphic. Blame ascription was not significantly different among the two groups and was seen only in a small proportion of parents of cases. When it did occur, it was directed at health professionals.

Blame ascription is not frequent in a cohort of Indian parents of children with Down syndrome even when dysmorphism is perceived by parents. Genetic counseling was associated with better knowledge about Down syndrome in the parents.