Attitudes Toward Children With Clefts in Rural Muslim and Hindu Societies

Abstract

Many charitable organizations conduct overseas missions to correct cleft lip and palate where surgical care is hard to obtain. However, little is known about genetic backgrounds, cultural and societal attitudes regarding the cleft deformity. A questionnaire has been designed to elicit these attitudes. The questionnaire was administered to 50 families of children with cleft lip seeking care at Operation Smile missions in each of 2 disparate rural communities, one in the state of Gujarat in India and the other in the upper Nile valley in Egypt. Saliva and blood samples were collected from all patients to investigate MSX1, IRF6, PVRL1, MHC class I chain related (MICA), TP73L, MTHFR, TGF-beta3, and RAR alpha genes, within a proposed multinational genetic research project for cleft causation using micro-array and polymerase chain reaction (PCR) methods. All patients had been operated and experienced good results through the follow-up period, which was ranging from 3-24 months. Demographic data defined literacy and educational level; answers established the degree of social isolation, the impact on the family, and the expectations of what surgery would accomplish for the child. Beliefs concerning the causation of the cleft were explored in detail. Knowledge of these issues is important for the more complete care of children in an unfamiliar cultural environment.