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.

German animal terms for oral cleft deformity: A Leipzig survey

“…They also struggled with lower income and job accomplishment, and are more dependent on their families compared with noncleft individuals. Some patients experienced complete ostracism from society in their entire life (Danino et al, 2005;el-Shazly et al, 2010;Versnel et al, 2010). Our results supplement those from previous studies.…”

“…1). In some societies, people believe that birth defects may be somewhat related to supranatural mating or hybridism between human and animal parents (el-Shazly et al, 2010). Until now, animal terms still appear in many scientific papers (Mayer, 1829;Ma, 2000), professional websites (Freytag, 2011;Rühling, 2011), books for the cleft patient's family (Masaracchia, 2005), and the International Statistical Classification of Diseases and Related Health Problemsd10 (German Modification: ICD-10-GM; available at: http://www.dimdi.de/static/ en/index.html).…”

Eye tracker based study: Perception of faces with a cleft lip and nose deformity

“…Animal terms are often used to describe cleft stigmata such as 'hare lip' which was already used in Chinese literature describing the first cleft operation (AD 265-420) (Ma, 2000). Also in the German language several terms are used to describe a cleft lip, palate and/or nose; hare lip, wolf's throat, sheep's nose, hawk's nose, camel's mouth as well as parrot's nose (Martens and Eckoldt, 1804;Gurlt, 1898;Trauner and Wirth, 1958;El-Shazly et al, 2010;Pausch et al, 2012).…”

Cleft Lip and/or Palate

“…3,4 These erroneous views of cleft etiology may deter the parents from pursuing treatment for fear of disrupting God's plan. Many factors play a role in why surgery cannot be performed in a timely fashion.…”

“…Many factors play a role in why surgery cannot be performed in a timely fashion. 3 Clefts of the lip and/or palate may occur sporadically or in conjunction with other anomalies as a sequence, such as Pierre Robin, or as part of a syndrome. Therefore, access to surgical treatment for underprivileged populations, rural or urban, is limited-especially for elective procedures.…”