Causal attributions of cleft lip and palate across cultures.

Objective : To describe and compare the causal beliefs associated with cleft lips and/or palates across several different countries. Design : Cross-sectional survey. Setting : Operation Smile surgery screenings in six developing countries. Participants : Two hundred seventy-nine adult patients and parents of children with cleft lips and/or palates in Kenya, Russia, Cambodia, India, Egypt, and Peru. Interventions : In person interviews were conducted with interpreters. Main Outcome Measure : As part of a larger study, a semistructured questionnaire was created to explore cleft perceptions, belief systems that affect these perceptions, and social reactions to individuals with clefts. Results : Causal attributions were grouped by category (environment, self-blame, supernatural, chance, unknown, or other) and type of locus of control (external, internal, or unknown). Results indicate significant difference by country for both causal attribution category (P < .001) and type (P < .001). This difference was maintained in multivariate analyses, which controlled for differences by demographic variables between countries. Conclusions : This study provides evidence that causal attributions for clefts are influenced by culture. As harmful beliefs about cause may continue to impact affected individuals and their families even after a repair, it is insufficient to provide surgical care alone. Care of the entire person must include attempts to change misinformed cultural beliefs through educating the broader community.

Attitudes toward children with clefts in rural Muslim and Hindu societies.

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.

Perceptions, expectations, and reactions to cleft lip and palate surgery in native populations: a pilot study in rural India.

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.