Perceptions, Expectations, and Reactions to Cleft Lip and Palate Surgery in Native Populations: A Pilot Study in Rural India

Abstract

Objective Many charitable organizations conduct overseas missions to correct cleft lip and palate where surgical care is unavailable. However, little is known about cultural and societal attitudes regarding the cleft deformity. Method A 15-item questionnaire was designed to elicit from parents general knowledge concerning cleft lip and palate, beliefs regarding its causation, and expectations of what surgery would accomplish. Shorter second and third questionnaires were administered after the screening process and after surgery. The initial phase of this project was undertaken in Deesa, a midsized rural town in India. Fifty-two families were selected randomly for the initial questionnaire. These interviews were conducted verbally, assisted by translators. Children in 25 of these 52 families subsequently underwent surgery. Results The results of the interviews indicated that 64% of parents did not limit their child's social interaction and were not ashamed to be seen in public. Twenty-six percent exercised some constraints, and 10% kept their children totally isolated, not permitting them to leave the house or attend school. Regarding causation, the vast majority (84%) ascribed the cleft to “God's will” and 10% to sins committed in past lives. Only one parent acknowledged the influence of genetics, although several had a positive family history. Environmental factors were not an issue. Most families expected their child's life to be better when the facial deformity was corrected. Marriage prospects were the main concern, more so for girls than boys. Educational opportunity was a second strong theme. Conclusions A greater understanding of the beliefs and expectations in this region was gained by means of this study.