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Year : 2018  |  Volume : 15  |  Issue : 1  |  Page : 50-57

Psychosocial impact of cleft lip and palate children on their parents

1 Dental and Maxillofacial Department, Federal Teaching Hospital, Gombe State, Nigeria
2 Department of Oral and Maxillofacial Unit, Aminu Kano Teaching Hospital, Kano State, Nigeria
3 Department of Community Medicine, University of Ibadan, Oyo State, Nigeria
4 Department of Oral Pathology, University College Hospital, Oyo State, Nigeria

Date of Web Publication23-Mar-2018

Correspondence Address:
Dr. Akinwale A Efunkoya
Department of Oral and Maxillofacial Unit, Aminu Kano Teaching Hospital, Kano State
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Source of Support: None, Conflict of Interest: None

DOI: 10.4103/njbcs.njbcs_20_17

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Aim: To analyze the psychosocial impact of orofacial cleft child on the parents in Kano, North Western Nigeria. Material and Methods: We interviewed 150 parents of patients with orofacial clefts using Interviewer Administered Questionnaire (IAQ) from June to December 2012 for mood state, family stress coping strategy, and impact of cleft on parents using POMS-SF, FSCQ, PICP-Q questionnaire, respectively. Results: Age range of parents was 15–65 years (F: M = 7.3:1); the parents in the 2nd decade formed the largest group (44.7%) followed by the parents in the 3rd decade (36.7%). Following POMS-SF rating, 89.3% of the respondent had good mood, 3.3% had fair mood, while 7.3% had poor mood. Most of the parents (97.3%) were able to cope with the stress of caring for a cleft child. Stress among the parents of children having bilateral cleft was higher than unilateral cleft but not statistically significant. Also, the stress felt by the parents having children with severe cleft was higher than mild-moderate cleft though not statistically significant. The mood state of the parent that had children with either unilateral or bilateral clefts were similar, while there was no statistically significant difference in the mood of parents of children that had mild-moderate or severe cleft. Conclusion: Through this study, we corroborated that the psychosocial impact of orofacial cleft is not easy to define and quantify. The most important concern among the parents in all these categories was surgical correction for their wards.

Keywords: Cleft lip, cleft palate, psychosocial, parental stress

How to cite this article:
Fakuade BO, Efunkoya AA, Adebayo AM, Adisa AO. Psychosocial impact of cleft lip and palate children on their parents. Niger J Basic Clin Sci 2018;15:50-7

How to cite this URL:
Fakuade BO, Efunkoya AA, Adebayo AM, Adisa AO. Psychosocial impact of cleft lip and palate children on their parents. Niger J Basic Clin Sci [serial online] 2018 [cited 2021 Jun 16];15:50-7. Available from: https://www.njbcs.net/text.asp?2018/15/1/50/228355

  Introduction Top

Clefts are splits or gaps in developing lips, ridges, palate and faces, occasioned by environmental or hereditary factors. Cleft lip (CL), cleft palate (CP), or cleft lip and palate (CLP) are the most common orofacial congenital malformations found amongst live births, accounting for 65% of all head and neck anomalies.[1] The prevalence of orofacial clefts varies due to geographic, racial, and ethnic differences.[2],[3] It commonly occurs among Indians, Orientals, Afro-Caribbeans,[4] andAfricans. It is prevalent amongst Nigerians,[5] but commoner among the Hausa/Fulani in the Northern than the Southern counterpart due to consanguineous marriages.[6]

Till date, the focus of most psychosocial researches on orofacial cleft has been related to the impact of the condition on the affected persons,[7] as opposed to the negligible consideration of such impact on the family. A study has suggested that the mothers of children with clefts, experience great stress and handle marital conflicts poorly when compared to control groups.[8]

MacGregor, in his studies of aberrant visual characteristics, described 'facial disfigurement' as the ''most devastating of social handicaps”, he surmised that such defect can change the entire outlook of the family.[9] The cleft of the lip and the palate distorts speech and facial appearance, it may cause shock/anxiety to parents and repulsion from peers.[10] The disfiguring of the face may also provoke dread, negative attributes, and the mistaken assumption that ugly is bad or evil, these often times make the parents assume that their child will be rejected. Parents have therefore reported their worries about social issues such as their child's acceptance by peers, experiences of teasing, finding a life partner, and securing employment.[11] Most parents are often not prepared for the birth of a child with a facial cleft deformity and generally do not have the necessary knowledge on how to deal with the unexpected deformity. The severity of the cleft and the overbearing impact on the parents therefore may cause myriads of conflicting emotions.[12] A study had suggested the development of separation and strained relationships between parents, and development of mental disorders related to the stress involved in bringing up a child with CL.[13] The birth of a child with a defective facial structure therefore has significant stressful impact on the parents, who have to cope with the physical and social demands of parenthood and also with the strains of a perplexing facial anomaly.[14]

Due to the prevalence of cleft lip and palate in the Northern part of Nigeria and the rarity or scarcity of literature on CL and CP especially the psychosocial impact on parents, we therefore designed this study to highlight the psychosocial impact of orofacial clefting on the parents in our environment and also understood their coping strategies.

  Material and Methods Top

This is a prospective descriptive cross-sectional study of parents and patients with orofacial clefting attending the Armed Forces Specialist Hospital (AFSH), Kano from June to December 2012. AFSH is a secondary health facility, attended by two major groups of patients, which include the immediate military community and the general civilian population. It serves as a referral center for CLP patients referred from the Kano state hospitals to the Grassroots Smile Initiative clinic (a non-governmental organization) and from the hospitals of the bordering states like Jigawa, Zamfara, Yobe, and Bauchi.

The study was conducted using a self-designed questionnaire (Appendices) modified from the type used for parents with autistic children.[15] The instrument used was an Interviewer Administered Profoma (Questionnaire). The questionnaire consist of 72 items with four major components; Profile Of Mood State-SF (POMS-SF), Family Stress Coping Questionnaire (FSCQ), Psychological Impact of Cleft on Parent-Questionnaire (PICP-Q), Cleft Severity Scale (CSS).

Parents of live CLP children ranging between birth and early adolescent (birth - 10 years) who consent to participate in the study and relative/guardian/foster parent or anybody close enough to the patient from birth to childhood, to such an extent that there is social and emotional connection. Excluded in the study group are parents of CLP patient who do not consent, or parents of children diagnosed to have other severe congenital anomalies such as mental retardation.

The study protocol (Ref No MORHREC/APP/002/12) was approved by the ethical committee of Ministry Of Defense Health Research and Ethics and the study conducted from June–December 2012. Collection of data was through IAQ (Interview Administered Questionnaire) written in English and translated to Hausa. The translator was standardized by a pretest of the questionnaire. The same translator was used for the entire study. The questionnaire comprises of five sections divided into A and B. Section A had fifty seven questions, while Section B has fifteen questions; this resulted in a total of seventy-two questions.

Questions in the questionnaire were finalized after a pilot distribution of fifty primary survey forms, among the parents with CLP patients attending the AFSH Kano. The first part of the definitive questionnaire enquired about the parents and child demography, profile of mood state, family stress coping strategy, and psychosocial impact of cleft on patient.

The second section measured the severity of cleft depending on extent and part of the face affected. The severity of cleft was measured for all patients by assessing 3 aspects: the face, the lip and the palate. The face had a 5 point Likert scale from 0–4, (0 = No facial cleft, 1 = Unilateral incomplete facial cleft, 2 = Bilateral incomplete facial cleft, 3 = Complete facial cleft). The lip had a 5 point Likert scale from 0–4 (0 = No affectation, 1 = Notching of lip, 2 = Incomplete Unilateral/Bilateral, 3 = Complete Unilateral cleft lip, 4 = Complete Bilateral cleft lip). The palate had a 3 point Likert scale from 0–2, (0 = No cleft palate, 1 = Incomplete cleft palate, 2 = Complete cleft palate). The final severity of cleft score for each individual was a summation of the lip score, the palate score, and the face score. A designation of 'mild' was given if the final score was '0–1' and 'moderate' or 'severe' for scores of '2–3' and '>3,' respectively.

One hundred and fifty questionnaires were administered and using descriptive statistics an analysis of the collected data was performed using Statistical Package for Social Sciences (SPSS) Version 16. Chi-square test was used for the comparison of the qualitative test, while quantitative test was summarized using mean, standard deviation, and confidence interval. The data was further compared using student's t--Test and for one-way analysis of variance test while the level of significance was set at P < 0.

  Results Top

A total of 150 participants reported being parents or guardians of children with cleft lip and palate and responded to interviewer-administered questionnaires between June and December 2012 at the Armed Forces Specialist Hospital, Kano.

Demography of parents

Parents comprised of 18 males (12.0%) and 132 females (88.0%) with age range 15 to 65 years. Majority of the parents were in the age group of 20–29 years (44.7%). Followed by age group 30–39 (36.7%), and the age group 50–59 (1.3%) was the least [Figure 1].
Figure 1: Frequency of parents' age in decades

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A total of 36% of the parents had Islamic education, 28.7% had no formal education, 15% had primary school certificate, 14% had secondary school certificate, 5% had NCE certificate, and only 1.3% had University degree or higher national diploma [Figure 2].
Figure 2: Frequency distribution of educational status of the parents

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Many of the parents were unemployed (34.7%), while 31.3% of them were engaged in small businesses, 16% were artisans, and 14.7% were farmers and only 3.3% were civil servants [Figure 3].
Figure 3: Distribution of parents occupation

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Regionally, 63.3% of them were Hausa, 22.7% were Fulani, and Igbo formed 7.7%, while all other tribes together formed 13.3%. Totally, 93.3% of the parents were still married, while 4.7% were either divorced or separated; 0.7% of them were widows while 1.3% were single parents Many of the females that accompanied the cleft children were their biologic mothers (84.0%) and 1.3% of the females were adoptive mothers, while 9.3% were biologic fathers and the rest were guardians (5.4%).

Parents' emotional response to the cleft child

Four percent of the respondents had previous life birth of a cleft child in the nuclear family and 6.7% indicated that they had cleft children in their extended family. The maternal extended family had a higher incidence (4.7%), while the paternal extended family had only (2%) of the cleft patients. Most of the parents (63.6%) had never had any prior information about clefts, for the parents who had prior information about clefts only (46%) of them knew that any treatment was possible.

POMS-SF shows that 89.3% of the respondent had mild mood affectation (good), 3.3% had moderate (fair), while 7.3% had a severe affectation (poor). [Table 1].
Table 1: Analysis of POM-SF

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Impact of cleft on parent

The psychological impact caused by the cleft child was measured by checking if any of the family members, friends rejected the parent or if the parent was having problems with the spouse due to the child. The logic used was that if any of the respondent answered positive to the questions in Appendix I A (12, 13, and 17), then PICP-Q will be affirmative. Results showed that (89.3%) of the respondents were not psychologically affected [Table 2]. This corresponds to results from the PICP-Q, which also gave 89.3% similar to the POMS-SF rating of mild-mood affectation of 89.3%.
Table 2: Analysis of PICP-Q

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Parents' coping strategy

All the respondents indicated that the support from the medical facility was helpful and most of them also indicated that they got support from the family and encouragement from friends. Only 2.7% of the respondent indicated it was stressful for them caring for a cleft child. [Table 3].
Table 3: Assessment of stress using FSCQ-A

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Of all the respondents, 46% were from polygamous family settings and of these 36.0% had two wives, 8.0% had three wives, while 5.3% had four wives or more.

From the results shown in [Table 5], there was no relationship between CSS and POMS-SF. The severity of the cleft did not in any way affect the mood of the parents. [Table 4] shows the results of the cleft severity scale. A total of 8.33% of the parents with children that had severe cleft impairment had severe mood.
Table 5: Relationship between POMS-SF and CSS

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Table 4: Assessment of severity using CSS

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The relationship between FSCQ-A and CSS was also examined and the results showed that there was no correlation as only 2.08% of parents with severe cleft complained of stress in caring for the cleft child. [Table 6].
Table 6: Relationship between FSCQ-A and CSS

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Equally, the relationship between PICP-Q and CSS [Table 7] was looked into and the results showed that severity did not impact negatively on the psychology of the parents of the cleft child. It would have been expected that the more severe the cleft of the child, the more this should impact on the parents, rather 85.42% of the parents with children that had severe cleft impairment answered “No” to the PICP-Q questions.
Table 7: Relationship between PICP-Q and CSS

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The stress among the parents of children that have bilateral cleft was higher than those that have children with unilateral cleft, this however was not statistically significant (P = 0.364). Furthermore, the stress among parents with children that had severe clefts was higher than those in children with mild to moderate cleft, this equally was not statistically significant (P = 1.36) [Table 8]. There was no statistical significance in the mood of parents of children that had mild-moderate or severe cleft (P = 0.187), while the mood state of parent that had children with either unilateral or bilateral clefts was similar [Table 9].
Table 8: Statistical Analysis of FSCQ

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Table 9: Statistical Analysis of POMS-SF

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  Discussion Top

From the study, it was established that there was no relationship between cleft severity, the mood, the stress felt, and psychological impact on the parents of the children. However, it was found that most children (65.3%) had complete cleft anomalies, which were either unilateral or bilateral. This is in agreement with reports by various authors [16],[17] who reported greater number of complete clefts in their studies. In this study, females were more than males when considering all clefts. This is similar to Omo-Aghoja et al.[18] from southern Nigeria, but differs from the reports of Cooper et al.[19] and Al-balkhi [20] who found that males are generally more affected by clefts.

Maternal age is a known risk factor for some developmental abnormalities, but a consensus about maternal age being a risk factor for having a child with oro-facial cleft has not been reached.[21],[22] Some have even argued that a high paternal age may be a risk for cleft palate.[23],[24] In this study, however, majority of the parents with cleft children were in the 3rd decade of life. Jamilian et al. and Blanco-Davila [25] reported that mother's age was not an important aetiological factor for oro-facial clefts.

Consanguinity has been suggested as possible etiology for the formation of oro-facial clefts.[6] Another reason why younger parents are more of the respondents in this study maybe because, the age group (3rd decade) cannot psychologically adjust to the defect of their children as much as the older parents can,[26],[27] hence the reason for younger parents seeking more treatment for their children.

Most of the parents in this study had no formal education, which is consistent with reports by Krapels et al.[28] They identified low maternal education as a risk factor for having a child with cleft and speculated that parents with low education tend to have less healthy diet and supplements. Elisabeth Maurice et al.[29] concluded that children of less educated mothers are exposed to more health risks, worse social support, and higher medical care consumption, corroborating this.

Patients were mostly accompanied by their biological mothers, expectedly so, because fathers often blamed mothers [30] and abandoned the care of the children to the mothers. A certain number of grandmothers also came with their grandchildren, probably due to the stigmatization that mothers of such children were subjected to. Study by Unweni and Okeigbemen [30] shows that the effect of cleft birth is greater on the mother than the fathers. Hanna Abebe in an Ethiopian study [31] also observed that mothers (women) carry great responsibilities and are often considered as subordinates to their husbands.

Omo Aghoja's intuition into the family history shows some relationship, among the extended family members, hence the report that orofacial cleft is commoner in the maternal relations (8.8%) compared to paternal relation (1.5%).[18] This agrees with our study. This is however at variance with the study reported by Bray Isabel et al.,[32] where they observed that history of orofacial cleft association is more in the paternal than in the maternal. Most of the parents affirm lack of sufficient information about orofacial cleft children throughout their antenatal clinic attendance, hence the tremendous challenge they often get into while raising and meeting the need of the orofacial cleft children.

From this study, most of the respondents indicated that social support was helpful in adjusting to the care of their cleft child, because most families lived with their extended family as opposed to the nuclear models in other climes. Most of the family models in this study were polygamous, hence, an elaborate support system, which might have reduced the stress of caring for cleft children alone. Indeed many of the parents in this study indicated little or no stress in the care of the cleft children.

Few respondents indicated that they were having problems with their spouse (4% divorce and 3% separation), while a study by John et al.[33] reported a 6.8% divorce and 4.9% separation. Also reported in the Vanderbilt University Medical Center weekly journal was 11.25% divorce rate in congenital malformations.

It can be deduced from this study that most parents were not ashamed of their cleft children as more than 80% of such children who were of school age were already attending school, this indicates that the parents had a positive psychosocial outlook as shame or guilt are indices of reduced self-esteem or negative psychosocial value. Future studies can however investigate any difference between biologic children and adopted children with respect to psychological impact on the parents.

Studies [34],[35] have reported negative mood affectation in parents of children with disability. This was not the case in this study, as up to 89.3% of respondents claimed they had only mild to moderate affectation. This may be because of the parental beliefs and or culture, which adduces events to faith or Gods will [36] in northern Nigeria. The stress in parent was higher amongst those of children having bilateral than the unilateral cleft (though not statistically significant), contrary to a study by Kumar et al.[37] wherein they reported that the psychosocial impact of orofacial cleft is not easy to define and quantify, hence the difficulty in correlating it to the severity of the problem. However, a Denmark study corroborated this assertion by highlighting the increased adult suicide rate [36] in cleft lip and palate patient and also the increase in number of school dropouts among orofacial cleft patients.[38] It is therefore logical that the bilateral cleft patient with worse facial deformity is likely to result in more negative impact on the parent. Parents mood was not affected by severity or type of cleft in this study, probably because most of the parents knew about free cleft treatments via already-treated members of the clan, radio jingles, clan heads, and local health workers.

The level to which orofacial cleft child affects the parent is more in female parents than the male (although not statistically significant). This is corroborated by an Umweni and Okeigbemen [30] study and also underlined in a study by Lemwik in an Ethopian society, where he concluded that a child's condition is believed to have been caused by the mother's wrong deed in the past.

  Conclusion Top

Stigmatizations, feeling of guilt, depression are factors, which affect parents of cleft children; however, the psychosocial effect of having a cleft child is not significantly expressed because the parents are able to cope. The psychosocial impact of orofacial cleft is not easily defined and quantified, and was corroborated by the non-statistical significant effect of stress felt, among the parents of children with different categories of cleft like bilateral/unilateral, severe/mild-moderate clefts. The most important concern among the parents of cleft children was to get the face repaired, so that they could integrate with the society at large.

It is imperative therefore that adequate provision be made by government (through health policy formulations) for awareness campaign and education on cleft birth. This will help in no small way in reducing the stress felt and hence the development of coping strategies.

Financial support and sponsorship


Conflicts of interest

There are no conflicts of interest.

  References Top

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  [Figure 1], [Figure 2], [Figure 3]

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


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