Is cleft still a taboo? Beliefs and expectations of parents of cleft lip and palate patients: A study from an institute in North India

Abstract

Introduction: Cleft lip and palate are a common but significantly disfiguring congenital anomaly affecting children. Besides the multiple problems they pose regarding the child's feeding, speech, and hearing, being visible, they cause a major social stigma. Different degrees of parental guilt and shame are frequently encountered, primarily due to the perceived cause of the birth defect. Aims: This study aims to define parental perceptions associated with a child of cleft lip or palate and their social significance. Materials and Methods: A detailed questionnaire was structured based on a previous study by Weatherly-White (2004). A sample of 64 families was selected by total enumerative sampling technique over a period of one year. Tools were translated into Hindi (local language) and validated. Parents not willing to participate or unable to understand Hindi or English were excluded from the study. The data were collected using questionnaire and semi-structured interviews. Ethical clearance was obtained and consent was taken from parents for participation in the study. Results: Parents of 63 patients were interviewed and the results were tabulated. Conclusion: The study identified many cultural and societal attitudes that deeply affect the way that communities treat children with clefts and other facial deformities. The results interestingly almost mirror the last study similar to this, almost 20 years ago. It is surprising to note the beliefs and perceptions about clefts have remained largely unchanged.