|Year : 2017 | Volume
| Issue : 2 | Page : 109-113
Impact of educational and socioeconomic status of parents on healthcare access in cleft patients
Divya Narain Upadhyaya1, Guru Prasad Reddy1, Raj Kumar Mishra2, Arun Kumar Singh1
1 Department of Plastic and Reconstructive Surgery, King George Medical University, Lucknow, Uttar Pradesh, India
2 Department of Plastic and Reconstructive Surgery, Sushrutha Institute of Plastic Surgery, Lucknow, Uttar Pradesh, India
|Date of Web Publication||11-Aug-2017|
Divya Narain Upadhyaya
B-2/128, Sector-F, Janakipuram, Lucknow - 226 021, Uttar Pradesh
Source of Support: None, Conflict of Interest: None
Introduction: There is a wide disparity in the access to treatment facilities between developed and developing countries in cleft lip and palate (CLP) management. Factors ranging from poverty and illiteracy to paucity of healthcare services affect the patient accessing these services. Objective: Information regarding the socioeconomic and educational status of the parents of CLP patients admitted in a tertiary centre in Northern India was collected and analyzed to find any correlation between the above and the age of child at the first presentation to the hospital. Methods: Data were collected from parents of 200 consecutive patients of CLP presenting for surgery. The data set included variables such as age and sex of the child, age and literary status of the parents, household income, distance to the hospital from home, and the source of information that made them visit the hospital. Results and Conclusion: There was significant association between the age of first presentation and the literary status of the mother and father (P = −0.005 and 0.02, respectively), socioeconomic status of the family (P = −0.02), and the distance from the hospital. Other observations, though impressive, were not statistically significant. This proves the impact of socioeconomic and literary status of parents on availing access to healthcare services for their children.
Keywords: Cleft lip and palate, demographic data, literacy, socioeconomic status
|How to cite this article:|
Upadhyaya DN, Reddy GP, Mishra RK, Singh AK. Impact of educational and socioeconomic status of parents on healthcare access in cleft patients. J Cleft Lip Palate Craniofac Anomal 2017;4:109-13
|How to cite this URL:|
Upadhyaya DN, Reddy GP, Mishra RK, Singh AK. Impact of educational and socioeconomic status of parents on healthcare access in cleft patients. J Cleft Lip Palate Craniofac Anomal [serial online] 2017 [cited 2019 Jun 19];4:109-13. Available from: http://www.jclpca.org/text.asp?2017/4/2/109/212838
| Introduction|| |
Cleft of the lip and/or palate (CLP) is one of the most common congenital abnormalities with an incidence of 1 in 700. The etiology is multifactorial and includes heredity and environment. Studies have found that antenatal exposure of mother to alcohol, smoking, and certain drugs along with increased maternal age might increase the risk for facial cleft. A family history of cleft lip and/or cleft palate (CP) is the strongest risk factor for having a subsequent child being born with the abnormality.
Although the facilities for cleft care are available in a majority of health care facilities, most of the parents are unaware of these and it is not surprising to sometimes see an adult with an unrepaired CLP. Several modes of educating the general public, such as outreach camps and media campaigns, are able to cater to the need for awareness to a certain extent, but a vast majority of population is still not privy to the information.
Various studies have been published to define the factors affecting clefts, but it is as important to collect data on the socioeconomic aspects of the cleft problem for better planning of health care delivery to these patients.
| Methods|| |
This prospective, observational study was conducted in a medical university hospital. The data were collected from two major cleft centers of the city including one outside the university. A series of 200 consecutive patients with cleft lip and/or CP being admitted for surgery, after preliminary preoperative assessment, during a period of 6 months from June 2016 to December 2016 were included in the study. A detailed questionnaire was designed and the data were collected from the parents of the child if the child was a minor or the patient himself/herself if a major. The variables included age and sex of the child, age at first presentation to the hospital, and age of mother and father. Data were also collected about the educational qualification of mother and father, their household income.
Data were also collected about the distance of patient's residence to the nearest hospital as well as the current institution, knowledge of the family about charities such as smile train and the referral channel through which the patient learned of the cleft care provisions at the current center. Institutional Ethics Committee approval was obtained and informed consent taken from the parents of all patients before collecting the demographic data.
Data were subjected to analysis by SPSS software (SPSS Inc. Released 2009. PASW Statistics for Windows, Version 18.0. Chicago, USA) and the results tabulated. ANOVA and Student's t-test were used for comparison between groups for continuous data and Chi-square test for categorical data. P < 0.05 was considered significant. Correlation between literacy of parents, socioeconomic status, and distance to the nearest hospital as well as the current center against the age of first presentation to the hospital was assessed.
| Results|| |
Age, sex, and laterality
A total of 200 patients with CLP were included in the study. Male patients comprised 58.5% of the total cases and females 41.5% with a male-to-female ratio of 2.3:1. The age of the patient at the first visit ranged from 1 month to 45 years, with a median age at admission of 1.5 years. Parental age of the cleft patients ranged from 20 to 90 years with a median age of 29 years for mothers, and paternal age ranged from 22 to 65 years for fathers with a median age of 32 years [Table 1].
|Table 1: Age of the patient at the time of surgery and first presentation along with age of parents|
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Of the 200 children, cleft lip alone was the most frequent occurrence (95/200) followed by cleft lip along with CP (90/200) and finally CP alone (15/200). Majority of the clefts in lip were unilateral (81%) and 22 patients had bilateral cleft lip and one patient with midline cleft. Of the patients with unilateral cleft lip, left-sided cleft was predominant with 113 patients getting affected, and right-sided cleft lip was noted in 49 patients.
Of the 200 patients, 105 patients had CP with hard palate clefts alone in 4 patients and soft palate clefts alone in 3 patients with the rest having cleft involving both the hard and soft palate.
Literary status of maternal population was assessed based on the educational qualification, and majority of mothers were illiterate (118/200). Nearly 18.5% of mothers received primary school education and the rest had attended secondary school education or higher. Graduates and postgraduates comprised 13.5% [Figure 1]a.
|Figure 1: (a) Literary status of parents (mothers), (b) literary status of parents (fathers)|
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Fathers of the patients fared a little better with a literacy rate of 64% (primary school or higher education). Graduates and postgraduates in the paternal population were around the same frequency as in the opposite sex (14.5%) [Figure 1]b.
When correlated with the age at the first presentation of the patient to the hospital, literacy status of both the parents turned out to be significant (applied one-way ANOVA test; P = 0.05 for the maternal population and 0.02 for paternal population). Literate parents were found to bring the children with CLP at an earlier age compared to their counterparts who were not literate.
More than half of the patient's families (52.5%) had a household income of <Rs. 3000 (approximately 50 USD dollars) per month (105/200), and only 3% of the families had a household income more than Rs. 20,000 approximately per month. Age of presentation was significantly higher in patients from lower household income indicating that parents from higher household income have greater awareness [Figure 2].
Awareness about charitable organizations like smile train was reported by 36.5% of parents (73/200). Most of the parents (61.5%) brought their kin to the hospital through the medium of outreach camps (113/200). Referral from a physician or another patient constituted 31.5% (63/200) of the total attendees. Role of media campaigning, television, and radio advertising was restricted to 7% (14/200) of patients who came to attend the hospital [Figure 3].
Distance to the hospital
Mean distance to the nearest hospital was 4.10 km and that to the current hospital was 145.30 km. Both of these were not significantly related to the age of first presentation [Figure 4].
| Discussion|| |
Illiteracy and lack of awareness along with low family per capita income are patient-related factors that influence the early presentation of the patient to the hospital. We have attempted to underline the various factors leading to the delay/nonavailing of the existing healthcare facilities by these patients, by analyzing the demographic profile of 200 consecutive CLP patients seeking admission for surgery.
Age at presentation in cleft patients gives an estimate of the awareness among parents about the deformity and their knowledge about the need for early intervention. The age of the patients in our study varied from 3 months to 45 years with a median age of around 1.5 years at the time of admission, which shows the delay in reporting compared to the usual age at which the patients should get operated. This is similar to the data presented in a study by Orkar et al. where the average age at the time of surgery was 14.5 months. Kharbanda et al. in their study also reported similar data where more than half of the patients received primary lip surgery beyond the age of 6 months. Dvivedi and Dvivedi. also reported a median age of 2.55 years at the time of first surgery with only around 40% of patients being operated before 2 years of age. This may be an indirect indicator of the unmet need of cleft care in the state. The state-wise statistics, according to Stewart et al., also quote a prevalent unmet need of 64.2% in Uttar Pradesh.
The male and female sex ratio of patients undergoing surgery was found to be 2.3:1 which was similar to previous studies.,, Male children are more predominant in the patient population than can be explained simply by the sex ratio in Uttar Pradesh state (912 females for every 1000 males). A possible explanation for this could be the still widely prevalent practice of female feticide and also a gender bias whereby the girl child is only reluctantly brought to the hospital for treatment of such defects. In our study, we noticed that the incidence of cleft lip alone was the highest followed by cleft lip in association with CP and finally CP alone. This is in contrast to what is known in the current literature which states that the incidence of cleft lip associated with palate has the greatest incidence followed by CP alone and isolated cleft lip having the least incidence.
Majority of the cleft lip patients in this study had a unilateral deformity with a unilateral to bilateral ratio of 9:1 which is similar to the study by Zhou et al. which reported a ratio of 10.4:1. Furthermore, our data show that left-sided clefts were more common than right (7:3). This is similar to a study conducted by Blanco-Davila which also suggested that clefts of the left side occurred more often than the right side and boys were affected more commonly than girls.
Unlike majority of the developed countries, health insurance coverage in India is dismal, and the expenses incurred on healthcare thus have to be borne by the patient or his/her family. This may be a cause of the hesitation on the part of the patient's family to bring the child to the hospital early. In our study group, income of most families fell short of Rs. 2000/-per month and with government defined “poverty line” of Rs. 1750, it may be said that majority of patients belong to the poor socioeconomic strata. A study by Irma and Puhó et al. studying clefts in children belonging to lower socioeconomic status has also corroborated our findings. Furthermore, dropout rates following the initial surgery are also higher in the Indian setup leading to a delay in further management. Gopalakrishna and Agrawal. in their study discussed the one stage repair of both the CLP practiced by several plastic surgeons in the Indian scenario to decrease the financial and time burden on the patients family. Although this appears beneficial, it delays the first surgery, is difficult in underweight and anemic children and account to longer anesthesia time and hence is a matter of debate.
Educational status of parents has a positive influence on their awareness about the deformity affecting their child, their knowledge about the availability of appropriate healthcare services and about the various government and charitable organizations, which deal with these deformities. Literacy status of the mothers of cleft patients in our study had a significant correlation to the age at which the children were brought to the hospital for the first time. Majority of the maternal population was illiterate (59%) with only 13.5% of the mothers completing education beyond graduate level. This is at odds with the literacy statistics from the Uttar Pradesh census for the year 2011 where the female literacy rate is 51%, with 41% of the study population with primary school education or more.
Paternal population had a higher literacy rate (64%) compared to mothers, but this still lags behind the male literacy rate of Uttar Pradesh (77%). The paternal literacy too has a significant correlation to the age at the first presentation leading to the conclusion that literacy status of both the parents is equally responsible for the delay in the age at which the healthcare advice is sought. Illiteracy causes a lack of awareness about the problem the child has and the easy availability of health services for an effective management of the child. The parents are often not aware that the problem needs to be addressed at the right time for the best results to follow. This causes sufficient morbidity to the child, which is often totally avoidable. Misconceptions about causation of clefts, such as solar or lunar eclipses or as a punishment for acts committed in the previous life also may explain the delay in seeking treatment in various societies.
A number of charitable organizations work toward the management of cleft deformities, and smile train is one of the many such organizations, providing financial aid to institutions and physicians for cleft care of patients who cannot afford the cost of healthcare. Awareness of such organizations allays the anxiety in patient's family regarding the financial constraints involved in healthcare and helps in accessing hospital services early, leading to improved outcomes in cleft patients. Our study highlighted the lack of information in the parents of cleft patients regarding such charities with only 36.5% of parents being aware of Smile Train or any other cleft charity. Outreach camps were the major driving force for the parents to bring their kin to the hospital contributing to almost 61.5% of patient population.
It is general consensus that availing healthcare by the patients belonging to lower socioeconomic status is affected by the distance that they have to travel to reach the nearest hospital. In a study conducted by Naram et al. in Hyderabad, the average distance travelled by a patient to the hospital for the management of CLP was 173 km on an average. Our patients had travelled an average of 145.3 km of distance from their native place for treatment. Although the distance travelled and age at the first presentation are not correlated significantly, the scatter diagram [Figure 4] shows that majority of patients hail from distances 200 km with very few patients from farther places indicating that parents from nearby places only are likely to bring their children to any cleft center and also indicating indirectly the penetrance of cleft care facilities in India in the recent past.
| Conclusion|| |
Access to healthcare is directly influenced by literacy status of the parents and economic status of the family. Awareness regarding free cleft treatment is poor among patient population and most patients come to know of it only through outreach camps. There is need for interventions not only in the healthcare sector but also among the general population that are aimed at better literacy and conducting outreach programs and advertising through electronic and social media to increase awareness about the availability of healthcare services for various congenital deformities.
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Conflicts of interest
There are no conflicts of interest.
| References|| |
Mossey PA, Castilla E. Global Registry and Database on Craniofacial Anomalies. In: Proceedings of the World Health Organization Registry Meeting on Craniofacial Anomalies. Brazil, Bauru; 2001.
Lei RL, Chen HS, Huang BY, Chen YC, Chen PK, Lee HY, et al.
Population-based study of birth prevalence and factors associated with cleft lip and/or palate in Taiwan 2002-2009. PLoS One 2013;8:e58690.
Penfold CN. Cleft lip and palate evidence-based care. In: Booth PW, Schendel SA, Hausamen JE, editors. Maxillofacial Surgery. St. Louis, MO: Churchill Livingstone; 2007. p. 1000.
Orkar KS, Ugwu BT, Momoh JT. Cleft lip and palate: The Jos experience. East Afr Med J 2002;79:510-3.
Kharbanda OP, Agrawal K, Khazanchi R, Sharma SC, Sagar S, Singhal M, et al
. Clinical profile and treatment status of subjects with cleft lip and palate anomaly in India: Preliminary report of a three-center study. J Cleft Lip Palate Craniofacial Anomalies 2014;1:26-33.
Dvivedi J, Dvivedi S. A clinical and demographic profile of the cleft lip and palate in Sub-Himalayan India: A hospital-based study. Indian J Plast Surg 2012;45:115-20.
] [Full text]
Stewart BT, Carlson L, Hatcher KW, Sengupta A, Vander Burg R. Estimate of unmet need for cleft lip and/or palate surgery in India. JAMA Facial Plast Surg 2016;18:354-61.
Zhou QJ, Shi B, Shi ZD, Zheng Q, Wang Y. Survey of the patients with cleft lip and palate in China who were funded for surgery by the Smile Train Program from 2000 to 2002. Chin Med J (Engl) 2006;119:1695-700.
Mossey PA, Little J. Epidemiology of oral clefts: An international perspective. In: Wyszynski DF, editor. Cleft Lip and Palate: From Origins to Treatment. New York: Oxford University Press; 2002. p. 127-58.
Richard PJ, William PS. Cleft lip and palate: Developmental abnormalities of the face, palate, jaws and teeth. In: Russel RC, Williams NS, Bulstrode CJ, editors. Bailey and Love's Short Practice of Surgery. 23rd
ed. London: Arnold Publishers; 2000. p. 586-9.
Blanco-Davila F. Incidence of cleft lip and palate in the northeast of Mexico: A 10-year study. J Craniofac Surg 2003;14:533-7.
Puhó E, Métneki J, Czeizel AE. Maternal employment status and isolated orofacial clefts in Hungary. Cent Eur J Public Health 2005;13:144-8.
Gopalakrishna A, Agrawal K. A status report on management of cleft lip and palate in India. Indian J Plast Surg 2010;43:66-75.
] [Full text]
Gupta K, Bansal P, Dev N, Tyagi SK. Smile Train project: A blessing for population of lower socio-economic status. J Indian Med Assoc 2010;108:723-5.
Naram A, Makhijani SN, Naram D, Reddy SG, Reddy RR, Lalikos JF, et al.
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.
[Figure 1], [Figure 2], [Figure 3], [Figure 4]