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 Table of Contents  
ORIGINAL ARTICLE
Year : 2021  |  Volume : 8  |  Issue : 2  |  Page : 127-133

Impact of cleft lip and palate before and after treatment in a low-income population


1 Department of Oral and Maxillofacial Surgery, NHS Trust Hospital, Poole University, Poole, UK
2 Department of Cleft and Craniofacial Surgery, GSR Institute of Craniofacial and Facial Plastic Surgery, Hyderabad, Telangana, India

Date of Submission12-Jan-2021
Date of Acceptance30-Mar-2021
Date of Web Publication7-Jun-2021

Correspondence Address:
Dr. Monal Karkar
GSR Institute of Craniofacial and Facial Plastic Surgery, Hyderabad, Telangana
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jclpca.jclpca_1_21

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  Abstract 


Background: Individuals with cleft lip and palate (CLP) and other craniofacial deformities are often perceived negatively in various social circumstances, resulting in failure to achieve full socio economic potential. Aim of the study: This study aimed to identify social stigmata and their causes associated with CLP and other deformities in an Indian population from a low socio-economic background, ways to reduce such effects and the potential reduction of disability following surgery. Methods: To assess the general awareness of the patients and their families regarding clefts, A GSR Institute: Cleft-Awareness Questionnaire (Reddy SG et al 2018) was used for data collection. 100 consecutive patients treated in GSR Institute for Craniofacial and Facial Plastic Surgery in Hyderabad, Telangana, were invited to join the study Statistical analysis regarding consanguineous marriage, understanding of clefts by parents and members of their community and of their societal conditions and the impact before and after surgery was carried out. Results: Statistical analysis using chi-squared test regarding the frequency of consanguineous marriage revealed no significant difference between the expected and observed frequencies in Telangana whereas there was a significant difference (p<0.001) between the values in India and also for understanding of clefts by parents (p<0.001) and friends/neighbours (p<0.001). On Kruskall-Wallis test and Pearson Chi-Squared Goodness of Fit test, no significance was observed on social conditions and associated problems faced by child before and after surgery respectively. Conclusion: These results confirm the impact of social stigmata in an Indian population with CLP and other craniofacial deformities predominantly related to the lack of education due to low socio-economic background and a heightened sense of superstitions of family, friends/neighbours of the affected individual thereby, causing embarrassment and depression. However, these were alleviated by surgical intervention and adequate speech therapy, thereby, improving social acceptance.

Keywords: Cleft lip and palate, cleft-awareness, Indian, low socioeconomic background, social stigmata


How to cite this article:
Markus A, Reddy SG, Reddy RR, Karkar M. Impact of cleft lip and palate before and after treatment in a low-income population. J Cleft Lip Palate Craniofac Anomal 2021;8:127-33

How to cite this URL:
Markus A, Reddy SG, Reddy RR, Karkar M. Impact of cleft lip and palate before and after treatment in a low-income population. J Cleft Lip Palate Craniofac Anomal [serial online] 2021 [cited 2021 Sep 28];8:127-33. Available from: https://www.jclpca.org/text.asp?2021/8/2/127/317775




  Introduction Top


Cleft lip palate is the most frequently occurring facial deformity with global incidence of 1/500–1000 live births.[1],[2] In India, the number of infants born every year with cleft is 28,600.[3],[4] In many developing countries, for patients, problem goes beyond the obvious disfigurement of face extending to social stigma, mental impairment, loss of self-confidence, and emotional burnout.[5],[6],[7],[8] Surgical intervention reduces the social stigmata associated with cleft by improving crucial aspects of an individual's life affecting social condition, resulting in higher self-belief[9] and high level of satisfaction.[10] It is crucial to assess the patients and families psychologically and treat cleft as functional deformities, requiring complete rehabilitation with education, counseling, and speech therapy.[11]


  Materials and Methods Top


The aim of this study was to understand the underlying causes and effects of stigmata of cleft lip and palate and to identify ways to reduce such effects and the potential for the reduction of disabilities following the surgeries. The study was conducted at GSR Institute of Craniofacial and Facial Plastic Surgery, Hyderabad, Telangana, India, from 2015 to 2017. A total of 100 consecutive patients treated at this hospital were included in the study. A Cleft Awareness Questionnaire by the GSR Institute [Appendix 1] was designed to assess general awareness of the patients and their families about clefts.

The objective of this investigation was to gain some understanding of what the parents believed to be the cause of the cleft, whether this influenced their decision to seek treatment, how far they had traveled to receive appropriate treatment, and what they felt about their child's condition before and after surgery.

Inferential and descriptive statistics were used for statistical analysis. A Chi-squared test was carried out on the data regarding people's understanding of the clefts. Kruskal–Wallis tests, Mann–Whitney U-tests, and Chi-squared tests were used wherever appropriate. Descriptive statistics were carried out on the remaining data.


  Results Top


Demographic results obtained in our study are illustrated in [Table 1].
Table 1: Demographic details

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Condition of a child presurgery

The mean ranks of the child's emotional, social, and educational conditions showed social condition to be poorer than the emotional and educational condition with P = 0.97 [Table 2].
Table 2: Presurgery mean rank of the different condition of patients

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Problems faced presurgery included feeding, speech, and appearances with a mean rank of 130.09, 119.83, and 129.58, respectively. On Kruskal–Wallis test, there was no significant difference between severity of problems faced presurgery [Table 2] and [Table 3]. The descriptive statistics recorded a mean ranking of 2.7817 and 1.314 for problems faced across all problem areas pre- and post-surgery, respectively. There was significance in the pairing of feeding and appearance as P < 0.05, at a 95% confidence level, and there was no significance in the pairings of feeding with speech and speech with appearance, indicating that speech is the area with the most problems faced postsurgery. On independent Chi-squared test, there was a significant difference (P < 0.001), at a 99% confidence level, between the ranking chosen for number of problems presurgery.
Table 3: Mean rank of the observed and expected values of severity of feeding, speech, and appearance problems faced by the child presurgery

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Problems faced by the child postsurgery

The mean ranks of the child's feeding, speech, and appearance postsurgery were statistically significant postsurgery on Kruskal–Wallis test. Mann–Whitney U-test was carried out on each pairing of feeding, speech, and appearance. [Table 3] shows the mean ranks and P value for each pairing of problems faced postsurgery. Thus, there was significance in the pairing of feeding and appearance as P < 0.05, at a 95% confidence level, and there was no significance in the pairings of feeding with speech and speech with appearance, indicating that speech is the area with the most problems faced postsurgery [Table 4] and [Table 5].
Table 4: Mean rank of the observed and expected values of severity of with pairing feeding, speech, and appearance problems faced by the child postsurgery

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Table 5: Observed and expected values of severity of feeding, speech, and appearance problems faced by the child postsurgery

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The descriptive statistics recorded a mean ranking of 1.314 for problems faced across all problem areas postsurgery, where 1 = no problems, 2 = some problems, and 3 = many problems. On independent Chi-squared test, there was a significant difference (P < 0.001), at a 99% confidence level, between the ranking chosen for number of problems postsurgery.

Cosmetics and speech were slightly lower and social changes were slightly higher than expected for those who are satisfied with the changes. However, on Pearson's Chi-squared goodness-of-fit test, changes in social life were not significantly higher than cosmetic and speech changes [Table 6].
Table 6: Observed and expected values of the cosmetic, social, and speech problems in child postsurgery

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Descriptive statistics

How the children were born

Only 2% of all patients were born preterm, implying that early births have no impact on the likelihood of being born with a cleft lip and palate.

Age of child when first seen by medical specialty

Over 70% of children were seen by a medical professional from GSR in their 1st 6 months of life [Table 7].
Table 7: Age when child was first seen by medical professionals

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Parents' ability to explain about cleft

Respondents were asked if they could explain about the cleft as yes/no, which shows that very few, <10% of respondents, were confident that they could explain what a cleft is.

Expectations for child's future

Parents were asked what their expectations (negative/neutral/positive) were for their child's future, and the results showed that majority, >90%, of parents had positive expectations for their children's future during the preoperative period, and nearly 85% of respondents were very concerned about their child's problem.

Satisfaction with surgery

Respondents were asked whether they were satisfied with the surgery on their children. They were presented with a scale, 1 being not satisfied through to 5 being very satisfied. It showed high levels of satisfaction (95%) among respondents about the surgery on their children [Table 8].
Table 8: Parents satisfaction with surgery

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Communication

Respondents were asked (yes/no) whether they felt their children were able to communicate more easily after having surgery, which revealed that the vast majority, >90%, of respondents who answered this question felt that their children could communicate more easily after having surgery, but that less than 30% of patients attended speech therapy after surgery.

Speech therapy results

Respondents whose children attended speech therapy after surgery were asked further questions about the resulting changes from speech therapy. They were confident about improvement of their child's speech; participating in social gatherings and better rate of speech and overall behaviour [Table 9].
Table 9: Improvement of child's speech, participation in social gatherings, and rate of speech and overall behavior

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  Discussion Top


These results show that roughly two-thirds of patients were from areas over 100 km away from GSR Institute, with less than a quarter from under 20 km away, which demonstrates the great importance with which families consider cleft lip and palate.

On comparing the frequency of consanguineous marriage in Telangana with that of this sample, it was shown that the frequencies did not differ significantly, a surprising result as one would expect the literacy rate to be lower in a population from a low socioeconomic background as in the current study. If this association is correct, it would infer that the level of literacy is not significantly different between that of current sample and that of Telangana. Therefore, it seems unlikely that there is a link between consanguinity and illiteracy rates supporting the views of Mossey and Little.[3] However, various studies have shown consanguineous marriages to be more common in rural areas[12] and less affected by economic status.[13],[14]

Seven percentage of respondents said that they were able to explain what a cleft is, which may be due to shyness and lack of confidence in their own knowledge of the cleft. Parents believed that the causes of cleft were mostly due to reasons which seemed mostly superstitious like the mother of the cleft child conducting various activities during a solar eclipse, such as using a blade for chopping food.[8]

Presurgery social condition of cleft children was poorer than their emotional and educational conditions; it was seen that the social condition was only very slightly worse but not significantly. This was in contrast with the Studies done by Sousa AD et al, where emotional and educational conditions were more affected.[5],[15] Because of the social stigma and psychological condition, the individual with cleft have to face the social rejection and withdrawal which an individual with cleft must endure.[4],[5],[7],[16],[17] Conversely, there was a significant difference between feeding, speech, or appearance problems before surgery, indicating equal weightage on all the three problem areas. It shows that appearance is the biggest problem area and feeding the lowest with individual with cleft, when considering the associated social stigmata.[18]

Analysis of postsurgical problem areas showed that the difficulties faced in the problem areas of feeding, speech, and appearance were reduced. The severity of problems faced was not equal across all three areas and it showed that speech was the most severe problem area. This is to be expected postsurgery as surgery itself repairs the deformity, thus improving appearance and feeding ease; speech is also improved; however, to attain a proficient level of speech, it is necessary for patients to attend subsequent speech therapy.[4] Thus, surgery reduces stigmata not only by improving the social condition of the patient but also dealing with the cosmetic, social life, and speech of the patient. Surgical intervention creates increased opportunity for social acceptance.[19]

Less than 30% of patients were seen by a medical professional from GSR Institute in their 1st 6 months of life. 8% of patients were seen above the age of 3 years. This delay in treatment may be due to several factors, including insufficient funds for treatment, insufficient knowledge of cleft treatment and its availability, and superstitious beliefs. The parents' expectations for their children's future were incredibly high, with only 2% of respondents having negative feelings. Often unrealistic, high expectations presurgery may lead to dissatisfaction postsurgery;[15],[20] however, postsurgery satisfaction in the present study was very high. Surgical outcome was evaluated based on patient satisfaction, with close to over three-quarter feeling extremely satisfied with the outcome of surgery.


  Conclusion Top


The present study findings suggested a predominant relation of social stigmata of cleft to lack of education due to poor socioeconomic background. This heightened sense of superstitions of family and friends/neighbors affected the individual, thus invoking depression and embarrassment. However, these effects could be alleviated by improved surgical care and adequate speech therapy, thereby reducing the stigmatization caused and enhancing the social acceptance of the individual. Thus, establishing more cleft care centres nationwide shall provide free treatment with a well balanced team of highly skilled surgeons and therapists, thus improving the quality of life of the individuals.

Nongovernmental organizations play a major role by formulating substructure pertinent to local needs, thereby helping clinicians to effectively handle the piled-up confronting needs.[21]

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.


  Appendix Top


Appendix 1

GSR Institute: Cleft Awareness Questionnaire

Questionnaire to be conducted orally in Interviewee's native tongue

Answers to be recorded in English

Patient Name: -Gender: M/F

Date of birth: -Today's Date:

Registration No: -Interviewee:

General Awareness

  1. Location of Birth (place name/colony)?


  2. Distance travelled to GSR Hospital?


  3. 0-20 21-40 41-60 61-80 81-100 100+

  4. How was the client born?


  5. Preterm Full Term

  6. What did client's parents say of cleft?


  7. What did friends/neighbours say of cleft?


  8. How old was the client before seen by medical specialty?


  9. 0-6 months 6 months - 1 year 1-3 years 3 + years

  10. Can you explain to us what the cleft is?


  11. Yes No

  12. What are your expectations for the client's future?


  13. Positive Negative Neutral

  14. How are the parents of the client related?


  15. Consanguineous Marriage Marriage

  16. What might be the cause you are suspecting?


  17. What problems do you expect that the client might face?


  18. Are you aware of assistive devices (special bottles) for feeding?


  19. Yes No

    Before Surgery

  20. How concerned were you about the client's problem before surgery?


  21. (Not Concerned) 1 2 3 4 5 (Very Concerned)

  22. How did you react to the client's condition before surgery?


  23. Embarrassed Depressed Helpless

  24. Problems faced by the client before surgery?




  25. How was the condition of the client before surgery?




  26. After Surgery

  27. How satisfied are you with the surgery on the client?


  28. (Not satisfied) 1 2 3 4 5 (Very satisfied)

  29. Problems faced by the client after surgery




  30. Are you satisfied with the changes in the client after surgery?




  31. Has the client found it easier to communicate since having surgery?


  32. Yes No

    Hospital Services

  33. How do you feel about the services in our Hospital?


  34. Very Good Good Average Poor Very Poor

    Suggestions, if any

  35. How did the doctors and staff treat you and your family members?


  36. Very Well Well Average Poor Very Poor

    Speech Related

  37. After which surgery did you find major improvement in the client's speech?


  38. Lip Palate SABG Pharyngoplasty Other

  39. Did the client attend speech therapy?


  40. Yes No

    If yes, answer the following questions:

  41. Do you think regular speech therapy has improved the client's speech?


  42. Yes No

  43. How much does the client participate in social gathering after speech therapy?


  44. Often Sometimes Not Much Unknown

  45. What is the client's rate of speech now?


  46. Fast Normal Slow

  47. Did speech therapy cause any changes in the client's behavior?


Signature



 
  References Top

1.
Berk NW, Cooper ME, Liu YE, Marazita ML. Social anxiety in Chinese adults with oral-facial clefts. Cleft Palate Craniofac J 2001;38:126-33.  Back to cited text no. 1
    
2.
Murray J. Gene/environment causes of cleft lip and/or palate. Clin Gen 2002;61:248-56.  Back to cited text no. 2
    
3.
Mossey P, Little J. Addressing the challenges of cleft lip and palate research in India. Indian J Plast Surg 2009;42 Suppl: S9-18.  Back to cited text no. 3
    
4.
Reddy SG, Reddy LV, Reddy RR. Developing and standardizing a center to treat cleft and craniofacial anomalies in a developing country like India. J Craniofac Surg 2009;20:1664-7.  Back to cited text no. 4
    
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Sousa AD, Devare S, Ghanshani J. Psychological issues in cleft lip and cleft palate. J Indian Assoc Pediatr Surg 2009;14:55-8.  Back to cited text no. 5
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Reddy SG, Reddy RR, Bronkhorst EM, Prasad R, Ettema AM, Sailer HF, et al. Incidence of cleft lip and palate in the state of Andhra Pradesh, South India. Indian J Plast Surg 2010;43:184-9.  Back to cited text no. 6
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Loh J, Ascoli M. Cross-cultural attitudes and perceptions towards cleft lip and palate deformities. World Cult Psychiatry Res Rev 2011;6:127-34.  Back to cited text no. 7
    
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Weatherley-White RC, Eiserman W, Beddoe M, Vanderberg R. Perceptions, expectations, and reactions to cleft lip and palate surgery in native populations: A pilot study in rural India. Cleft Palate Craniofac J 2005;42:560-4.  Back to cited text no. 8
    
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Lefebvre A, Munro I. The role of psychiatry in a craniofacial team. Plast Reconstr Surg 1978;61:564-9.  Back to cited text no. 9
    
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Broder HL, Smith FB, Strauss RP. Habilitation of patients with clefts: Parent and child ratings of satisfaction with appearance and speech. Cleft Palate Craniofac J 1992;29:262-7.  Back to cited text no. 10
    
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Reddy SG, Reddy LV, Reddy RR. Developing and standardizing a center to treat cleft and craniofacial anomalies in a developing country like India. Journal of Craniofacial Surgery. 2009;20:1664-7.  Back to cited text no. 11
    
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Reddy PG. Marriage Practices in South India: Social and Biological Aspects of Consanguineous Unions. Department of Anthropology, Madras University of Madras; 1993.  Back to cited text no. 12
    
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Bittles AH. Consanguinity and its relevance to clinical genetics. Clin Genet 2001;60:89-98.  Back to cited text no. 13
    
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Iyer S. Demography and religion in India. Oxford University Press, Oxford,U.K;2002.  Back to cited text no. 14
    
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Turner SR, Thomas PW, Dowell T, Rumsey N, Sandy JR. Psychological outcomes amongst cleft patients and their families. Br J Plast Surg 1997;50:1-9.  Back to cited text no. 15
    
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Pruzinsky T. Social and psychological effects of major craniofacial deformity. Cleft Palate Craniofac J 1992;29:578-84.  Back to cited text no. 16
    
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Turner SR, Rumsey N, Sandy JR. Psychological aspects of cleft lip and palate. Eur J Orthod 1998;20:407-15.  Back to cited text no. 17
    
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Ramstad T, Ottem E, Shaw WC. Psychosocial adjustment in Norwegian adults who had undergone standardised treatment of complete cleft lip and palate. II. Self-reported problems and concerns with appearance. Scand J Plast Reconstr Surg Hand Surg 1995;29:329-36.  Back to cited text no. 18
    
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Macgregor FC. Facial disfigurement: Problems and management of social interaction and implications for mental health. Aesthetic Plast Surg 1990;14:249-57.  Back to cited text no. 19
    
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van den Elzen ME, Versnel SL, Hovius SE, Passchier J, Duivenvoorden HJ, Mathijssen IM. Adults with congenital or acquired facial disfigurement: Impact of appearance on social functioning. J Craniomaxillofac Surg 2012;40:777-82.  Back to cited text no. 20
    
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Meara JG, Greenberg SL. The Lancet Commission on Global Surgery Global surgery 2030: evidence and solutions for achieving health, welfare and economic development. Surgery. 201;157:834-5  Back to cited text no. 21
    



 
 
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  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7], [Table 8], [Table 9]



 

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