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 Table of Contents  
ORIGINAL ARTICLE
Year : 2018  |  Volume : 7  |  Issue : 12  |  Page : 56-59

Knowledge, attitude, and perception of parents of children with congenital anomalies seen at a new tertiary hospital in Nigeria


Division of Paediatric Surgery, Department of Surgery, University of Abuja Teaching Hospital Gwagwalada, Abuja, Nigeria

Date of Web Publication19-Nov-2018

Correspondence Address:
Samson Olori
University of Abuja Teaching Hospital Gwagwalada, Abuja
Nigeria
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/nnjcr.nnjcr_27_17

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  Abstract 


Context: Congenital anomalies (CAs) which are also known as birth defects constitute a major deficit in health indices of the world. They occur in 3%–5% of all live births and are responsible for high mortality and morbidity, especially in the infancy. Aim: This study aims to evaluate the knowledge, attitude, and perception of CAs by parents in our environment. Materials and Methods: This was a cross-sectional study in which consenting parents whose children had CAs were asked to participate by completing the semi-structured questionnaire at the end of clerking their children who presented to the pediatric surgical outpatient clinic of our hospital. The questionnaires were self-administered except for few parents who were not literate for whom an interpreter was engaged to assist them in completing the forms. Results: Sixty forms were returned completed, but seven were rejected due to poor completion representing 11.6% of the total questionnaires. The modal age at which the children presented was 0–1 month. There were 32 males and 21 females children giving a male-to-female ratio of 1.5:1. Of a total of twenty-one different CAs, Hirschsprung's disease, and spinal bifida were the most common CAs, each accounting for seven (13.2%). Twenty-two (41.5%) of respondents thought the condition could affect the development of their children, but only 20 (37.7%) could state how they would. Fifteen (28.8%) respondents believed that the defects would negatively impact the social rating and societal relevance of their children; however, 37 (37.2%) thought otherwise. Conclusion: In this study, parental concerns about the cosmetic effects and growth deficit were high. Parent's disposition on how to raise their children with these CAs points to the level of knowledge they had about them.

Keywords: Anomalies, attitude, congenital, knowledge, parents, perception


How to cite this article:
Olori S. Knowledge, attitude, and perception of parents of children with congenital anomalies seen at a new tertiary hospital in Nigeria. N Niger J Clin Res 2018;7:56-9

How to cite this URL:
Olori S. Knowledge, attitude, and perception of parents of children with congenital anomalies seen at a new tertiary hospital in Nigeria. N Niger J Clin Res [serial online] 2018 [cited 2020 Oct 24];7:56-9. Available from: https://www.mdcan-uath.org/text.asp?2018/7/12/56/245789




  Introduction Top


Congenital anomalies (CAs) which are also known as birth defects constitute a major deficit in health indices of the world. They occur in 3%–5% of all live births and are responsible for high mortality and morbidity, especially in the infancy. They are a major cause of family pain and desperation, social stigma, and the financial burden of care are a well-established fact hence the World Health Organization (WHO) is making concerted efforts toward reducing its incidence.[1]

Aim

This study aims to evaluate the knowledge, attitude, and perception of parents whose children had CAs in our environment.

Our teaching hospital being new and the only one in the region with a high volume of pediatric cases, we thought information from this study may be of value in counseling parents whose children had congenital birth defects. There are scanty data on congenital birth defects in Nigeria. This study will, therefore, contribute to the volume of knowledge on birth defects in our region.


  Materials and Methods Top


It was a semi-structured questionnaire-based cross-sectional study in which consenting parents whose children had CA were asked to participate by completing the questionnaire at the end of clerking, their children who presented to the pediatric surgical outpatient clinic of our hospital. The present study was carried out over a 3-month period in 2009.

The questionnaires were self-administered except for few parents who were not literate for whom an interpreter was engaged to assist them in completing the forms. The completed forms were then returned to the investigator, and thereafter the parents counseled on the specific birth defect their child had with respect to the etiology, pathology, its course and effects on the child, and treatment outcome.

Parents were informed of their right to decline participation which would not in any way affect the management of their children.

The data collected were then collated and analyzed using EPI info 3.3.2 statistical soft ware (manufactured by CDC Atlanta GA, USA) and results presented in tables.

The inclusion criteria were all willing parents whose children had a CA. While all poorly completed forms were excluded from the study.


  Results Top


Sixty forms were returned completed, but seven were rejected due to poor completion representing 11.7% of the total questionnaires. The modal age of the patients at presentation was 0–1 month [Table 1]. There were 32 males and 21 females giving a male-to-female ratio of 1.5:1. Of a total of 21 different CAs, Hirschsprung's disease, and spinal bifida were the two most common CAs, each accounting for seven (13.2%) [Table 9].
Table 1: Age at presentation

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Table 9: Pattern of congenital anomalies that presented

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Five families had a history of CAs, but only one family had a defect (spinal bifida) similar to that reported in the other member of the extended family. Whereas, 11 (20.8%) of the respondents knew the type of CA their children had, 42 (79.2%) did not know [Table 2].
Table 2: Any family history of congenital anomalies

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Twenty-two (41.5%) of the respondents thought the conditions could affect the development of their children, but only 20 (37.7%) could state how they thought it would [Table 4] and [Table 6]. Fifteen (28.8%) of 52 respondents believed that the defect would negatively impact the social rating and societal relevance of their children; however, 37 (71.2%) thought otherwise [Table 5]. This finding was statistically significant with a value of P = 0.002 (P < 0.05).
Table 4: Knowledge about the effect

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Table 6: Parents perception of the effect of congenital anomaly

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Table 5: Social ranking

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In relating the educational level of parents to the occurrence of congenital disorders in the children, the parents with secondary level education had the highest number followed by tertiary level and the primary level was third [Table 7]. When the educational levels were grouped into low and high with never educated, Koranic, and primary as low and secondary and tertiary as high, there was a significant statistical difference in the occurrence of the CA related to educational levels with a value of P = 0.00002061 (P < 0.05). This suggested that parents with a higher level of education sought medical attention more than others with a lesser level of education. [Table 8] shows the occupation of the parents; 21 (39.6%) were businessmen (traders and contractors), followed by civil servants 18 (34%). Parents from both occupations account for 73.6% of the cases of CAs. Artisans and the unemployed were two (3.8%) and 12 (22.6%), respectively. When the occupations were stratified into two economic groups with artisan and the unemployed as low-income group (14 respondents) and civil servants and businessmen as high-income group (39 respondents), there was statistically significant difference in the two groups that brought their children to the hospital with higher economic group being in the lead.
Table 7: Educational level of parents

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Table 8: Parents occupation

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To a question, do you think this condition could affect the child's development; 22 (41.5%) answered yes, while 31 (58.5%) answered no. Of the 22 respondents, who answered yes to that question above, nine of them thought their children diseases might result in poor growth, seven of them thought they result in cosmetic deficit, and while two each thought they might result in mental retardation and death. [Table 6] shows parents perception of the effects of CA on the children development.

Twenty-six (49.1%) parents expressed the desire to raise them up with extra care and attention while the rest would raise them like other normal children. Forty-seven (92.2%) of the respondents did not know what might have caused the defect whereas 4 (7.8%) claimed they knew. Similarly, 12 (22.6%) did not know if the condition could be treated, but 41 (77.4%) were aware the condition of their children were treatable [Table 3]. Of these children, who presented to the clinic with CA, 18 fathers and 35 mothers brought them to the hospital this may be a reflection of the attachment of parents to their children with special needs as no extended family members were involved in bringing them to the clinic.
Table 3: Awareness of treatability

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  Discussion Top


CAs remain a major cause of family pains and financial drain on the national economy worldwide. This is because the treatment for CAs may involve multiple investigations, surgeries, rehabilitation; and sometimes, a lifelong dependence on others and these, unfortunately, are very expensive.[1],[2] The cost associated with management of CA, especially major and multiple ones are enormous, affecting the financial capability of the often, and low-socioeconomic group among whom these CA are more common.[3] The WHO is making concerted effort to mitigate the burden of these diseases through various interventions including models for prevention, especially those whose etiologies have been elucidated.[1],[4] In this study, we found out that CA was more with children of the higher educational and economic groups than with the low educational and economic groups.

Understanding these disease and their courses would help parents and guardians cope with the care of these children. Hence, an insight into the knowledge, attitude, and perceptions of the parents about these conditions would be an anchor for the successful upbringing and tend to the children with unique characteristics.[5],[6],[7] The attending physician should be conversant with challenges of counseling parents at the stage of presentation to win their confidence and trust for a long-time relationship in caring for these children with CA.

In this study, the modal age at presentation was the neonatal period. This is the period when the anxiety and guilt feeling is rife; therefore, the need to seek care is usually high.[7],[8]

The pattern of presentation which showed a higher number of children with Hirschsprung's disease and spinal bifida may be a true reflection of the higher prevalence of these anomalies in our environment at the time of this study. However, increase in the incidence of the neural tube defects (including spinal bifida) has been reported in various studies worldwide.[2],[4]

In response to a question; do you have a family history of birth defects? Forty-eight (90.6%) parents did not have a family history of any birth defect, but of the remaining five, one had similar pathology a spinal bifida. In some societies, a child with CA is considered as taboo and in such case CA-related information may not be volunteered by some parents. The taboo perception of the CA will negatively affect how the child is accepted into the family and his subsequent upbringing. In one recent report,[9] supernatural forces were noted highest among the possible causes of the congenital malformation. Such superstition was also encountered during counseling for one of the parents.

On the perception of the effect of the condition on the lives of their children, most parents did not think their children could be less important in the society than their peers, this was even when only 11 (20.8%) knew the type of anomaly their children had, this finding is contrary to a similar study from Egypt where the respondents agreed that CA could lead to low societal and self-esteem for their children with such challenges.[2],[10] However, in this study, the concerns for poor growth and cosmetic deficit by the parents were high. Most parents, (77.4%) however, had good knowledge that the birth defects could be treated; hence, those children were brought for medical attention. This may have a bearing on the parent's optimism on the ranking of their children with their peers since after treatment those children stand living a normal or near normal life.

One interesting finding in this study was that parents with higher educational level have a higher number of cases compared to the others. Equally intriguing was that the people with better employment and perhaps higher social class had more cases of CAs. This finding is, however, contrary to what is commonly known that the diseases are more common in the poor social and economic groups.[11] Our explanation for that would be that those parents may have brought in their children due to their knowledge and financial leverage compared to the non or lowly educated and poor who would rather allow them to die unattended either due to cultural belief or for lack of funds and access to treat them. Lawal et al. reported a higher number of the tertiary degree holders assessing more antenatal care and being more aware of CAs than the other women, but in their study at Ibadan, the overall assessment of the awareness of CA was poor.[12]

The perception of the defects by the respondents influenced their answer, to the question how would you raise this child? Twenty-seven (50.9%) and 26 (49.1%) responded that why would raise children like other children and with more attention for their special needs if any, respectively. Some children may be physically challenged as a result of some CA. Such children, no doubt would need some form of extra care in the management of their special needs.[7],[10] The almost equal response on the approach to care for these cases may be due to lack of appropriate knowledge by some of the parents about the type of disease and the effects they may have on their children even in the postcorrective period.

Of these children who presented to the clinic, 18 fathers and 35 mothers brought them to hospital. This may be a reflection of the attachment of parents to their children with special need as no extended family members were involved in bringing them to the clinic. This finding may be further strengthened or otherwise by a study on the pattern of caregivers who bring patients (children) for medical attention and the reasons why.


  Conclusion Top


In this study, parental concerns about the cosmetic effects and growth deficit were high. Parent's disposition on how to raise their children with these CAs points to the level of knowledge they had about them.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
  References Top

1.
Waitzman N, Scheffler RM, Romano PS. The Cost of Birth Defects: Estimates of the Value of Prevention. Lanham: University Press of Amer; 1996.  Back to cited text no. 1
    
2.
Mohammed AR, Mohammed SA, AbdulFatah AM. Congenital anomalies among children: Knowledge and attitude of Egyptian and Saudi mothers. Biol Agric Healthc 2013;3:2224-3208.  Back to cited text no. 2
    
3.
Lawoko S, Soares JJ. Distress and hopelessness among parents of children with congenital heart disease, parents of children with other diseases, and parents of healthy children. J Psychosom Res 2002;52:193-208.  Back to cited text no. 3
    
4.
Yoon PW, Rasmussen SA, Lynberg MC, Moore CA, Anderka M, Carmichael SL, et al. The national birth defects prevention study. Public Health Rep 2001;116 Suppl 1:32-40.  Back to cited text no. 4
    
5.
Fletcher JC. Attitudes toward defective newborns. Stud Hastings Cent 1974;2:21-32.  Back to cited text no. 5
    
6.
Adegbola AR. Attitudes and Dispositions of Parents and Caregivers Towards Children with Congenital Abnormalites in Selected Institutions in Surulere Local Government Area of Lagos State; 2012.  Back to cited text no. 6
    
7.
Lemacks J, Fowles K, Mateus A, Thomas K. Insights from parents about caring for a child with birth defects. Int J Environ Res Public Health 2013;10:3465-82.  Back to cited text no. 7
    
8.
Queisser-Luft A, Stolz G, Wiesel A, Schlaefer K, Spranger J. Malformations in newborn: Results based on 30,940 infants and fetuses from the mainz congenital birth defect monitoring system (1990-1998). Arch Gynecol Obstet 2002;266:163-7.  Back to cited text no. 8
    
9.
Bello AI, Acquah AA, Quartey JN, Hughton A. Knowledge of pregnant women about birth defects. BMC Pregnancy Childbirth 2013;13:45.  Back to cited text no. 9
    
10.
Hunfeld JA, Tempels A, Passchier J, Hazebroek FW, Tibboel D. Brief report: Parental burden and grief one year after the birth of a child with a congenital anomaly. J Pediatr Psychol 1999;24:515-20.  Back to cited text no. 10
    
11.
Gustavson KH. Prevalence and aetiology of congenital birth defects, infant mortality and mental retardation in Lahore, Pakistan: A prospective cohort study. Acta Paediatr 2005;94:769-74.  Back to cited text no. 11
    
12.
Lawal TA, Yusuf OB, Fatiregun AA. Knowledge of birth defects among nursing mothers in a developing country. Afr Health Sci 2015;15:180-7.  Back to cited text no. 12
    



 
 
    Tables

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



 

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