|Year : 2020 | Volume
| Issue : 1 | Page : 50-53
Is cleft still a taboo? Beliefs and expectations of parents of cleft lip and palate patients: A study from an institute in North India
Debarati Chattopadhyay1, Anindya Das2, Rupinder Deol3, Vandana Thakur3
1 Department of Burns and Plastic Surgery, AIIMS, Rishikesh, Uttarakhand, India
2 Department of Psychiatry, AIIMS, Rishikesh, Uttarakhand, India
3 Department of College of Nursing, AIIMS, Rishikesh, Uttarakhand, India
|Date of Submission||03-Jun-2019|
|Date of Acceptance||16-Oct-2019|
|Date of Web Publication||20-Jan-2020|
Ms. Rupinder Deol
College of Nursing, AIIMS, Rishikesh, Uttarakhand
Source of Support: None, Conflict of Interest: None
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.
Keywords: Beliefs, cleft lip, cleft palate, expectations of parents
|How to cite this article:|
Chattopadhyay D, Das A, Deol R, Thakur V. Is cleft still a taboo? Beliefs and expectations of parents of cleft lip and palate patients: A study from an institute in North India. J Cleft Lip Palate Craniofac Anomal 2020;7:50-3
|How to cite this URL:|
Chattopadhyay D, Das A, Deol R, Thakur V. Is cleft still a taboo? Beliefs and expectations of parents of cleft lip and palate patients: A study from an institute in North India. J Cleft Lip Palate Craniofac Anomal [serial online] 2020 [cited 2020 Jul 6];7:50-3. Available from: http://www.jclpca.org/text.asp?2020/7/1/50/276192
| Introduction|| |
Cleft lip and palate (CLP) 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.
Historically, the earliest documentation of cleft lip is based on a combination of religion and superstition. While Greeks ignored their existence, Spartans and Romans would kill these children as they were considered to harbor evil spirits. In China, hare lip was also thought to harbor evil spirits. Albeit not in such extremes, in India, clefts still remain an invisible population. A surgeon operating in dedicated cleft centers or holding outreach missions often encounter parents bringing in their child for the first time to medical attention. This is curious since the last three decades have witnessed multiple humanitarian organizations as well as centers dedicatedly treat these children in India. Based on such a scenario, we designed our study to identify some of the issues related to the beliefs and expectations of parents of cleft children.
Research related to beliefs of parents with CLP is scarce. Only research that has reported such aspects was that of Weatherly-White (2004). Almost a decade has passed since then and our aim was to replicate a similar study to understand how perceptions and beliefs around CLP have changed during this time. In addition, the above study was done in a rural area of Gujarat of Western India. Our study site is a tertiary care hospital situated in Uttarakhand, but it caters to a vast catchment area including the states of Uttarakhand, Uttar Pradesh, Himachal Pradesh, Rajasthan, Haryana, and some parts of Madhya Pradesh.
| Materials and Methods|| |
This study was a tertiary hospital-based descriptive study done over a period of 1 year.
Study population and duration
It was done over a period of 1 year on parents of children with cleft lip or cleft palate visiting the tertiary care setting. Only fathers and mothers of children were interviewed. As children come from different regions of North India, they are not accompanied by all family members. Hence, interviewing other family members was not feasible.
Parents not willing to give informed consent for participation or not understanding either Hindi or English were excluded from the study.
Sampling and sample size
As no definite data regarding the prevalence of the condition are available in state, sample size was not calculated and total enumerative sampling was done. A total of 64 families were interviewed by one of the researchers not directly involved in the treatment of these children. Parents were explained about the maintenance of confidentiality.
Data collection tools
Primary sources of data collection included questionnaire and semi-structured interview. Data collection tools included three parts. The tools used were adapted and modified as per the tools used in the study by Weatherly-White. The first questionnaire assessed the sociodemographic profile of the respondents. The second part was a structured questionnaire related to stigma associated with deformities. The third part evaluated the “expectations from surgery.” The interviews were conducted by nursing pesonnel who was not part of treating team and was supervised by the research team.
Reliability and validity
The tools were validated and reliability was checked. Tools were translated into Hindi language, back-translated, and retranslated, followed by a pilot study on five families. The tools were found to be reliable and valid.
The study was started after due permission of institutional ethics committee.
The recorded data were analyzed using appropriate statistical methods.
| Results|| |
As per the sociodemographic characteristics of children, 40 (63%) were female and 24 (37%) were male children. The mean age of presentation was 2 years and 3 months. As per the level of literacy, in only 15 (23%) families, both parents could read and write. In 36 families, one parent was literate (20 mothers and 16 fathers). In the remaining 13 families, both parents were illiterate (20 mothers and 16 fathers). Literacy was defined as one of the five levels, ranging from totally illiterate to “literate plus” (i.e., able to read and discuss newspaper articles) [Table 1], [Table 2], [Table 3], [Table 4], [Table 5].
|Table 2: Percentage distribution of children as per their diagnosis (n=64)|
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|Table 4: Rank order for cleft as per reasons given by family members under God's will (n=32)|
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As per the occupational status of parents, occupation was assigned to one of the nine categories, ranging from unemployed to executive or professional. The majority of respondents were engaged in manual or agricultural labor. In five families, parents were professionals (teachers and software engineers). As per the language spoken, all the participants could speak and understand Hindi, whereas 54% could speak Garhwali and six families could speak English also.
As per the religion, 39 families were Hindu and 25 families belonged to Muslim religion. Out of the total 64 children, 17 (27%) had cleft lip only, 18 (28%) had cleft palate only, and 29 (45%) had both CLP. Out of the total sample, 9 (14%) patients had a family history of cleft lip and/or palate.
The findings related to structured questionnaire on stigma associated with deformities found that 32 (50%) families believed that there was no reason for causation of cleft in their child, whereas another 50% believed that occurrence of cleft in their child was God's will. Further, 42% of families reported that others have told them that reason for occurrence of cleft in their child was solar eclipse (42%), spiritual belief (28%), God (28%), and insufficient care during pregnancy (2%).
Out of the total sample, 64% of parents had discussed about their child with other family members, 28% with friends, and 8% with doctor. As per the blame for cleft, 25% of parents did not blame anyone, whereas 75% of parents blamed God for their child's cleft. As per the level of socialization, 50% of parents reported that they do not avoid any places because of their child's condition, whereas another half (50%) of the parents reported that they avoid family gatherings because of their child's condition.
Forty-eight (75%) families said that the child required more care than the rest and so their daily routine is different with this child than others, whereas the remaining 25% reported no difference in their daily routine.
As per the long-term hopes and concerns, most families expressed an entirely reasonable expectation that their child's life would be better after the deformity was corrected. Total 60% (39 of 64) of parents expressed their conviction that after corrective surgery, their child would have a better chance of achieving a more beneficial marriage. This issue was of greater concern in girls than in boys (23:16). About 45% (30 of 64) of parents hoped that the child will have a better educational opportunity if defect is corrected.
The third part of the questionnaire revealed expectations from surgery. The reasons given for wish for surgery included better speech (37%), look better (30%), general better life (25%), and feed (8%) [Table 6].
| Discussion|| |
In a study by Adeyemo, James, and Butali, 35.3% of respondents believed that cleft was an “act of God,” whereas others believed that it was either due to “evil spirit” (5.9%) and “wicked people” (9.8%). Seventy-three percent of the mothers were ashamed of having a child with orofacial cleft. Two of the respondents wanted to abandon the baby in the hospital.
Study results of Weatherly-White
In contradiction to the above findings, our study found that 32 (50%) families believed that there was no reason for causation of cleft in their child, whereas another 50% believed that occurrence of cleft in their child was God's will. None of the parents were ashamed of their child and nobody wanted to abandon their child.
The intriguing results of our study reveal a shift in the perceptions and beliefs of North Indian population. Mothers are not blamed for facial deformities. Many of the families seek help and many of them are aware that a corrective surgery will give the child a better future.
| Conclusion|| |
Our interviews yielded quite significant insights into beliefs and taboos, which would affect attitudes toward facial clefts and indeed, all obvious birth defects. Further studies can be done on larger sample size to generalize the findings.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Adeyemo WL, James O, Butali A. Cleft lip and palate: Parental experiences of stigma, discrimination, and social/structural inequalities. Ann Maxillofac Surg 2016;6:195-203.
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Perceptions of family members of children with cleft lip and palate in Hyderabad, India, and its rural outskirts regarding craniofacial anomalies: A pilot study. Cleft Palate Craniofac J 2013;50:e41-6.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6]