Perceptions of Family Members of Children with Cleft Lip and Palate in Hyderabad, India, and Its Rural Outskirts regarding Craniofacial Anomalies: A Pilot Study

Naram, Aparajit; Makhijani, Sumeet; Naram, Depack; Reddy, Srinivas Gosla; Reddy, Rajgopal R.; Lalikos, Janice F.; Chao, Jerry

doi:10.1597/10-170

Cited by 17 publications

(9 citation statements)

References 16 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…[16] In the present study, more family members were reported to have inferred that cleft is due to “evil spirit” and “wicked people” than mothers (respondents) of the children themselves. Penn et al .…”

Section: Discussionmentioning

confidence: 73%

See 1 more Smart Citation

Cleft lip and palate: Parental experiences of stigma, discrimination, and social/structural inequalities

Adeyemo

James

Butali

2016

Ann Maxillofac Surg

View full text Add to dashboard Cite

Background:Cleft lip and palate (CLP) are the most common craniofacial birth impairment and one of the most common congenital impairments in humans. Anecdotal evidence suggests that stigmatization, discrimination, and sociocultural inequalities are common “phenomenon” experienced by families of children with CLP in Nigeria. This study aimed to explore the stigmatization, discrimination, and sociocultural inequalities experiences of families with children born with CLP.Materials and Methods:The study was carried out at the surgical outpatient cleft clinic of the Lagos University Teaching Hospital, Lagos, Nigeria. This was a cross-sectional descriptive study among mothers of children born with CLP, using both interviewer-administered questionnaire and a semi-structured interview.Results:A total of 51 mothers of children with cleft lip and/or palate participated in the study. 35.3% of respondents believed cleft was an “act of God,” whereas others believed it was either due to “evil spirit” (5.9%), “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. About a quarter of the respondent wished the child was never born and 59% of the fathers were ashamed of the facial cleft. Fifty-one percent admitted that their relatives were ashamed of the orofacial cleft, and 65% admitted that their friends were ashamed of the cleft. In addition, 22% of the respondents admitted that they have been treated like an outcast by neighbors, relatives, and friends because of the cleft of their children. When asked about refusal to carry the affected children by friends, relatives, and neighbors, 20% of respondents said “Yes.”Conclusions:Myths surrounding the etiology of orofacial cleft are prevalent in Nigeria. Parents and individuals with CLP experience stigma as well as social and structural inequalities due to societal perceptions and misconception about CLP. Public and health-care professionals must be equipped with necessary knowledge to combat stigma, discrimination, social and structural inequalities, and misconceptions associated with orofacial cleft. CLP should be considered a facial difference rather than a disability.

show abstract

Section: Discussionmentioning

confidence: 73%

“…[15] In Hyderabad community, India, a commonly held belief is that cleft lip and palate (CLP) is caused by eclipse. [16]…”

Section: Introductionmentioning

confidence: 99%

Cleft lip and palate: Parental experiences of stigma, discrimination, and social/structural inequalities

Adeyemo

James

Butali

2016

Ann Maxillofac Surg

View full text Add to dashboard Cite

show abstract

“…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.…”

mentioning

confidence: 99%

Cleft Lip and/or Palate

Brydon¹,

Conway²,

Kling³

et al. 2014

Journal of Craniofacial Surgery

View full text Add to dashboard Cite

The data collected are from the largest reported cohort of orofacial cleft patients in India. The cleft type, sex distribution, and overall male predominance resemble previously reported distributions; however, fewer CP patients and greater cleft lip and palate patients presented than would be expected. The frequency of associated anomalies was lower than in previous reports. Although there is significant selection bias to milder cases from lower socioeconomic groups in this study, the large sample size is unique, and the data collected can provide a valuable framework to further study the epidemiology of cleft lip and/or palate in India.

show abstract

“…Especially when they live in rural areas and away from major cities and medical centers with complete CL/P team. [1][2][3][4] Most of these patients also have lack of medical or insurance coverage for the care of the condition. Therefore, it is common to have the care of these CL/P patients becoming dependent upon charity care and events organized by several groups of Indonesian plastic surgeons.…”

mentioning

confidence: 99%

An Analysis of Outcome in Cleft Lip and/or Palate Patients by Using Visual Analog Scale Scoring System From the Parents in Non-Plastic-Surgical Hospital Based Setting

Davita¹,

Narmada²,

Soedjana³

2018

jebmh

View full text Add to dashboard Cite

BACKGROUND Cleft lip and/or palate surgery is often times not accessible to all patients in developing countries, like Indonesia and other countries alike. Therefore, it is common to have the care of these patients becoming dependent upon charity care and events. Despite these efforts, there has been criticism that the performance and outcome have been suboptimal and unmonitored. The objectives of this study are-1) To identify a novel solution for resolving such issue for follow up and 2) To monitor the outcome by using Visual Analog Scale scoring system reported by the parents. MATERIALS AND METHODS Parents were separately asked to provide assessment using Visual Analogue Scale score from 1 to 10 on the appearance of their children before surgery, immediately after surgery, and six months later. Setting and Design-This is a prospective cohort study at our charity event in Gunungkidul, D. I. Yogyakarta (a small subset of the provincial district in Java Island) on January 14 th 2017. Statistical Analysis-The result was analysed using Kolmogorov-Smirnov distribution test and Friedman test. RESULTS Thirty-five parents whose 20 children underwent cheiloplasty and 15 palatoplasty were enrolled as respondents. The VAS score for before, immediately after, and six months after cheiloplasty were 3.4 with 95% CI (2.79-4.01), 7.95 with 95% CI (7.33-8.57), 8.75 with 95% CI (8.27-9.23) and P-value <0.01. The VAS score for before and immediately after, and six months after palatoplasty were 4.33 with 95% CI (3.41-5.26), 7.80 with 95% CI (7.04-8.56), and 7.12 with 95% CI (6.54-7.63) and P-value <0.01. CONCLUSION The outcome of cleft lip and palate patients in non-plastic-surgical hospital based setting showed a decent result by a significant increase in Visual Analog Scale score appraised directly by parents.

show abstract

Perceptions of Family Members of Children with Cleft Lip and Palate in Hyderabad, India, and Its Rural Outskirts regarding Craniofacial Anomalies: A Pilot Study

Cited by 17 publications

References 16 publications

Cleft lip and palate: Parental experiences of stigma, discrimination, and social/structural inequalities

Cleft lip and palate: Parental experiences of stigma, discrimination, and social/structural inequalities

Cleft Lip and/or Palate

An Analysis of Outcome in Cleft Lip and/or Palate Patients by Using Visual Analog Scale Scoring System From the Parents in Non-Plastic-Surgical Hospital Based Setting

Contact Info

Product

Resources

About