Perceptions of Family Members of Children with Cleft Lip and Palate in Hyderabad, India, and Its Rural Outskirts regarding Craniofacial Anomalies: A Pilot Study

Abstract

Objective This pilot study aimed to understand cultural perspectives on cleft anomalies in the community of Hyderabad, India, and its rural outskirts. Design Interviews focusing on perceptions of cleft lip and palate were conducted using a 21-item interview guide approved by the director of the Gosla Srinivas Reddy Institute of Craniofacial Surgery (GSR). Settings Interviews were conducted at GSR, a specialty surgical center located in Hyderabad, India. Patients and Participants All patients who presented to GSR with either cleft lip, cleft palate, or cleft lip and palate at the time of this study were included. Results Of the 23 families interviewed, 12 mothers believed the cleft was caused by an eclipse, and two believed the scientific explanation their physician offered. Fourteen families were offered no explanation for the cleft lip and/or palate at the time of their first physician visit. No families practiced non-Western methods for treatment of the cleft. One family identified beliefs held in the community that their child with a cleft lip was bad luck. Conclusion A commonly held belief in this community in India is that cleft lip, cleft palate, or cleft lip and palate are caused by an eclipse. Physicians appear to be providing families with insufficient education on cleft impairments. Data generated from studies similar to this can be used to design educational protocols that address this gap in community understanding of orofacial clefting.