"Fruits of our past karma": A qualitative study on knowledge about congenital anomalies among women in Pune district, India

Abstract

Background Congenital anomalies are distressing events when a fetal anomaly is detected during pregnancy, or the infant is born with a disability. Maternal health services in India do not provide information on these disorders as a part of routine activities. Objective To understand women’s knowledge on causes, prevention, abortion rights, attitudes towards disability, knowledge on medical care, rehabilitation and welfare services with the goal of identifying contents of birth defects education resources. Methods Qualitative descriptive design. Six focus group discussions were conducted with 24 women from Pune district. Qualitative content analysis was used to identify emergent themes. Results Three themes emerged. Firstly, knowledge on congenital anomalies was limited. These conditions were discussed generally with other adverse pregnancy experiences, and with reference to children with disabilities. Secondly, pregnancy termination for conditions considered to be untreatable was majorly advocated. Directive counseling for pregnancy termination was common. Thirdly, stigmatizing attitudes were responsible for children with disabilities being considered a burden, for maternal blaming, and for stigma and isolation of families. Knowledge on rehabilitation was limited. Conclusions for practice Participants lacked knowledge on these conditions. Three target groups and contents for birth defects education were identified. Women’s resource would include knowledge on preconception and antenatal opportunities for reducing risks, available medical care, and legal rights. Parents resources would provide information on treatment, rehabilitation, legal provisions and rights of disabled children. Resources for general community would include information on these disorders, as well as disability sensitization messages to ensure inclusion of children with congenital disabilities.