Assessment of Psychosocial Functioning among Patients with Cleft Lip/Palate and Their Mothers

Abstract

The psychosocial functioning of children and adolescents with cleft lip and/or palate (CL/P) and their mothers was evaluated using a cross-sectional survey. The quality of life, depression, and self-esteem questionnaires were administered to CL/P patients and their mothers. The study included 69 individuals with CL/P between the ages of 6 and 18 and their mothers. According to the patient’s age, CL/P patients and their mothers were divided into two groups: the infant group (6–12 years) and the adolescent group (13–18 years). Patients and mothers were requested to complete the questionnaires about life quality, self-esteem, and depression. According to the norm values of the Coopersmith Self-Esteem Scale, both child and adolescent groups have low self-esteem. However, adolescents’ self-esteem levels were substantially lower than those of children (p < 0.05). There were no significant disparities between mothers of children and adolescents in terms of quality of life and self-esteem. The Beck depression scale scores of mothers of children were found to be greater than those of pubescent mothers (p < 0.05). Patients with CL/P tend to have lower self-esteem as they age; adolescents tend to have lower self-esteem than toddlers. In contrast, mothers of children with CL/P are less susceptible to melancholy than mothers of children.

1. Introduction

Cleft lip and palate (CL/P) is a common congenital deformity causing upper lip, nose and alveolar malformation, esthetic and dental problems and functional disorders [1]. Modern interdisciplinary care for CL/P individuals aims at physical, functional and psychological rehabilitation [2]. Facial appearance has important effects on psychological well-being and communication skills [3].

Age is a crucial factor in the psychosocial development of individuals with cleft lip and palate (CL/P) and their mothers. Several studies suggest that the age of the patient may have an impact on their self-esteem, learning abilities and emotional well-being. For instance, Sischo et al. [4] found that older children with CL/P tend to have lower self-esteem than younger children, while Marques et al. [5]reported that mothers of younger children with CL/P experience higher levels of anxiety and depression compared to mothers of older children.

Speech-language problems and facial differences in CL/P patients can cause social reactions [6, 7], mocking and stigmatization [8] which may result in negative behavioral responses [9], low self-esteem, self-confidence and low quality of social interactions [3, 10, 11]. Age factor may affect the psychological development process in patients with CL/P. It was reported that adolescents with CL/P tend to have higher levels of self-esteem and lower levels of social anxiety and distress than adults [12]. Children and young adults with CL/P had greater behavioral problems and increased depression symptoms compared to healthy ones [13].

Cleft type also affects self-perception. The self-esteem of the individuals with cleft lip and palate (87%) was more affected than those with only cleft palate (75%), as the deformity in individuals with only cleft palate cannot be seen by others [14]. Despite some contradictory findings, the literature suggests that the relationship between age and psychosocial functioning in CL/P patients and their families is complex and multifaceted, influenced by factors such as the severity of the cleft, the timing of surgical interventions, and the presence of comorbidities. Nonetheless, to date, there have been limited studies investigating the psychosocial status of both individuals with CL/P and their mothers in a large-scale and multidimensional manner. Therefore, it is important to conduct further research to better understand the role of age in the psychosocial development of individuals with CL/P and their families.

2. Anxiety and depression in individuals with cleft lip and/or palate

Social anxiety is the state of anxiety that occurs when one is evaluated by others and worries about their perceptions. Physical appearance was found to be associated with social anxiety [15]. Individuals with CL/P and craniofacial anomalies are more prone to chronic social anxiety than unaffected ones [16]. Zeytinoğlu and Davey [17] reported that children born with CL/P tend to spend more time alone, have more negative interactions with their peers and participate in group games less frequently. These children with high levels of anxiety tend to exhibit more depressive behavior, especially outside the home and experience more bullying by their peers. Broder and Strauss [12] reported that 56% of individuals with cleft lip and palate, 49% of those with cleft palate and 33% of those with cleft lip need psychosocial support. It was reported that positive peer support in these individuals alleviated the negative effects of stigmatization [18].

3. Parents and mothers of individuals with CL/P

Situations that trigger or increase the stress of a family exponentially occur as a result of genetic or teratogenic factors that cause structural, functional, esthetic and psychological problems in children [19].

It was reported that mothers’ first reactions to their babies born with CL/P are often shock, grief, insecurity, fear and guilt [20]. Fear of possible mental disorders in children is extremely common among parents [21]. This first effect of the child on his/her parents often persists for a long time [22]. However, cognitive and psychological damages of parents’ intense stress reactions can be minimized by appropriate guidance and information shortly after birth [19].

Baby with CLP causes more trauma on their parents compared to ones with only cleft palate [21]. Turner et al. [3] considered that some of the parents had lower self-confidence due to CL/P. The process of lip repair can be an important determinant of mother-child attachment quality [17].

The purpose of present study is to asses psychosocial functioning among patients and mothers of these patients with CL/P by applying quality of life, depression and self-esteem surveys.

4. Methods

This study included 69 patients (32 females, 37 males) who applied to Gazi University Faculty of Dentistry Department of Orthodontics with CL/P and their mothers’ participation. In order to conduct the study, the ethics committee approval dated 09.05.2017 and numbered 77,082,166-604.01.02 was obtained from Gazi University Ethics Committee.

Exclusion criteria for the study:

• patients with any mental problems that would prevent their ability to understand/answer questions or give scores,

• patients with different racial and ethnic backgrounds,

• patients with syndrome, and

• illiterate individuals aged 0–5 years.

Inclusion criteria for the study:

Individuals with CL/P aged 6–18 years and their mothers participated in the study voluntarily. The mean age of individuals with CL/P was 14 ± 3.9 years. Patients were divided into two groups as children and adolescents. Twenty-nine patients between the ages of 6 and 12 (mean age 9 ± 1.8 years) were included in the children group, and 40 patients between the ages of 13–18 (mean age 16.3 ± 1.7 years) were included in the adolescent group. Also, mothers of these patients were divided into two groups as mothers of children and mothers of adolescents. The purpose and content of the study were explained to the volunteer individuals and their mothers in detail and the surveys related to the study were asked to be answered individually.

As a data collection tool, a total of six surveys, three for patients with CL/P and three for their mothers were used. Also, additional questions were asked to the mothers in order to obtain sociodemographic descriptive information. The following surveys were applied to the patients with CL/P:

• Generic Health-Related Quality of Life Questionnaire for Children (Kid-KINDL)[23],

• Coopersmith Self-Esteem Inventory,

• Depression Scale for Children.

The Kid-KINDL scale (KINDer Lebensqualitätsfragebogen: Children Quality of Life Questionnaire) developed by Ravens-Sieberer and Bullinger [24], which consisted of 24 items and six subdimensions (physical well-being, emotional well-being, self-esteem, family, friends and school) was used to evaluate the generic quality of life in children. The scores obtained from the scale vary between 0 and 100. The scale does not have any cut-off point, and high scores indicate good quality of life [25]. There are three versions of the KINDL scale, which are based on self-report used in different age groups. These include Kiddy-KINDL for children aged 4–7 (version implemented via interviewer), Kid-KINDL for children aged 8–11 and Kiddo-KINDL for adolescents aged 12–16 [24]. In this study, Kid-KINDL scale was applied for the children group and Kiddo-KINDL version was used for the adolescent group.

The Coopersmith Self-Esteem Inventory is available in three versions: school form (8–15 years), adult form (16 years and older) and short form. The original forms, the school form and the adult form, consist of 58 items and the short form consists of 25 items. Fifty of the items are related to self-esteem and eight of them are related to lie scale; false items are used to measure the defensive attitude of individuals [26, 27]. The original form of this scale consisting of 58 items was used in our study. In the scale, items showing high self-esteem have a score of two and items showing low self-esteem have a score of 0. The scores that can be obtained from the scale vary between 0 and 100. In this scale, a score below 50 indicates a low self-esteem level while a score above 50 is considered as high self-esteem level [28].

In this study, ‘the Depression Scale for Children’ developed by Kovacs [29] was used to measure the depression scores of children. This is a self-assessment scale consisting of 27 items that can be applied to children aged 6–17 years. Each item receives 0, 1 or 2 points depending on the severity of the symptom. The reverse items in the scale are scored reversely. The maximum score is 54. The higher the score, the more severe depression [30]. The cut-off score is suggested as 19 [29, 31]. Those with a scale score of 19 or higher were considered pathological [32].

Three surveys were applied to the mothers:

• SF-36 Quality of Life Scale,

• Rosenberg Self-Esteem Scale,

• Beck Depression Inventory.

The SF-36 Quality of Life Scale is a 36-item test that the individual answers by himself/herself in order to obtain information about the general health status of the individual.

In the present study, “The Rosenberg Self-Esteem Scale” developed by Morris Rosenberg [33] was used to assess the self-esteem levels of mothers of patients with CL/P. The Rosenberg Self-Esteem Scale consists of 12 subscales. However, while the first subscale aimed to measure self-esteem directly, the other subscales were designed to measure situations thought to be related to self-esteem [34]. In the reliability and validity study conducted by Korkmaz [34] for the adaptation of the Rosenberg Self-Esteem Scale to adult individuals, the mean values of women for the 12 subunits of the scale were reported.

“The Beck Depression Scale” was used to assess the depression levels of mothers of patients with CL/P. This is a 21-item self-assessment scale which measures the symptoms of characteristic attitude and the cognitive, emotional and motivational tendencies in depression [35]. The scores to be obtained from the scale range from 0 to 63 and scores of 17 and above indicate the presence of depression [36].

4.1 Statistical analyses

Statistical analysis were performed using the IBM-SPSS (International Business Machines—Software Package for Social Sciences) Statistics software (version 23.0; IBM, Armonk, NY, USA). Comparison of cleft types and age, education and income levels of mothers between groups were performed using Chi-Square analysis. Mann–Whitney U test was used for comparisons between the groups. Pearson correlation analysis was performed to determine the relationship between the D1-self-esteem subscale and other subscales of the Rosenberg Self-Esteem Scale. P-value <0.05 was considered statistically significant.

5. Results

A total of 69 CL/P patients, including 15 females (51.7%) and 14 males (48.3%) in the children group and 17 females (42.5%) and 23 males (57.5%) in the adolescent group participated in the study. Gender distribution in groups and sociodemographic data distributions of these mothers are shown in Table 1.

		mother of child		mother of adolescent		Total
Variable								n	%	n	%	n	%	p-value
Age	Under 25	0	0	1	2.5	1	1.4	0.012*
	Between 25 and 34	11	37.9	4	10	15	21.7
	Between 35 and 44	16	55.2	24	60	40	58
	Between 45 and 54	2	6.9	11	27.5	13	18.8
	Total	29	100	40	100	69	100
Gender of patients	Female	15	51.7	17	42.5	32	46.4	—
	Male	14	48.3	23	57.5	37	53.6
Education Status	High school	26	89.7	36	90	62	89.9	0.701
	College	1	3.4	2	5	3	4.3
	University	2	6.9	2	5	4	5.8
	Total	29	100	40	100	69	100
Marital status	Married	27	93.1	35	87.5	62	89.9	—
	Single	2	6.9	5	12.5	7	10.1
	Total	29	100	40	100	69	100
Income Level	1000–2000	18	62.1	10	25	28	40.6	0.083
	2000–3000	6	20.7	25	62.5	31	44.9
	3000–4000	4	13.8	4	10	8	11.6
	5000 and more	1	3.4	1	2.5	2	2.9
	Total	29	100	40	100	69	100
Are you responsible for other seriously ill patients in family?	Yes	0	0	2	5	2	2.9	—
	No	29	100	38	95	67	97.1
	Total	29	100	40	100	69	100
Can you mark your child’s cleft type?	Only cleft lip	5	17.2	0	0	5	7.2	0.041*
	Only cleft palate	2	6.9	6	15	8	11.6
	Unilateral CLP	17	58.6	25	62.5	42	60.9
	Bilateral CLP	5	17.2	9	22.5	14	20.3
	Total	29	100	40	100	69	100
Does your child have any other illnesses	Yes	0	0	0	0	0	0	—
	No	29	100	40	100	69	100
	Total	29	100	40	100	69	100

Table 1.

Gender and sociodemographic data distribution in groups.

*

significant at the level 0.05.

Individuals with CL/P were between 6 and 18 years of age and their mean age was 13.3 ± 3.9 years. The children group was between 6 and 12 years of age (mean age: 9.2 ± 1.8 years). The adolescent group was between 13 and 18 years of age (mean age: 16.3 ± 1.7 years).

According to the sociodemographic data given in Table 1, the marital status of two individuals in the mothers of children group and five individuals in the mothers of adolescents were single.

When the age groups of the mothers of children were examined, it was seen that 37.9% of the mothers were between 25 and 34 years of age, 55.2% were between 35 and 44 years of age, and 6.9% were between 45 and 54 years of age. In the mothers of adolescents group, 10% of the mothers were in the 25–34 age range, 60% were in the 35–44 age range, and 27.5% were in the 45–54 age range.

89.9% of the mothers are high school graduates, 5.8% are university graduates, and 4.3% are college graduates. In addition, 89.7% of the mothers of children and 90% of the mothers of adolescents are high school graduates.

While 40.6% of the families have income levels between 1000 and 2000 TL (Turkish lira), 44.9% between 2000 and 3000 TL, 11.6% between 3000 and 4000 TL, 2.9% have income levels of 5000 and above. While 62.1% of the families of children are in the 1000–2000 TL income group, 62.5% of the families of adolescents are in the 2000–3000 TL income group.

These mothers had no other serious patients to care for in the family.

While 11.6% of individuals with CL/P had only cleft palate, 60.9% had unilateral cleft lip and palate, 20.3% had bilateral cleft lip and palate cleft. While only cleft lip is seen in 17.2% of children group, it is not seen in the adolescent group.

According to the Chi-Square analysis, there was no significant difference between the groups of children and adolescents in terms of age, education level and income level (p > 0.05). There was a significant difference between the groups in terms of cleft types (p < 0.05). It is seen that the difference determined is due to only cleft lip and only cleft palate. While only cleft lip is seen at a higher rate in children, only cleft palate is seen at a higher rate in adolescents. Other cleft types were similar in adolescent and children groups.

6. Results of generic health-related quality of life questionnaire for children (kid-KINDL) assessment

There was no significant difference between the groups in terms of physical and emotional well-being, self-esteem, family, friends, school and total quality of life scores (p > 0.05). Although it was not statistically significant, it was observed that the scores of all subunits and total quality of life were higher in the children group (Table 2). Values in all units were within normal values for Turkish society.

6.1 Results of the Coopersmith self-esteem inventory and the depression scale for children assessments

In the Coopersmith Self-Esteem Inventory, self-esteem level below a score of 50 is considered low, and self-esteem level above a score of 50 is considered high [28]. According to this data, in this study, it was found that self-esteem level was low in children and adolescent groups with CL/P. When the individuals with CL/P were compared, it was seen that the self-esteem level of the adolescent group was significantly lower than the children group (p < 0.05) (Table 3).

Variable	Group	n	Mean	Median	Minimum	Maximum	SD	p-value
Bodily well-being	Child	29	16.0	16.0	9.0	20.0	2.8	0.512
	Adolescent	40	15.7	15.0	10.0	20.0	2.7
	Total	69	15.8	16.0	9.0	20.0	2.7
Emotional well-being	Child	29	16.2	17.0	9.0	20.0	2.6	0.316
	Adolescent	40	15.5	17.0	7.0	20.0	3.1
	Total	69	15.8	17.0	7.0	20.0	2.9
Self-respect	Child	29	13.9	14.0	6.0	20.0	4.0	0.487
	Adolescent	40	13.3	14.0	6.0	20.0	3.7
	Total	69	13.6	14.0	6.0	20.0	3.8
Family	Child	29	17.9	18.0	14.0	20.0	1.9	0.951
	Adolescent	40	18.6	18.0	11.0	65.0	8.0
	Total	69	18.3	18.0	11.0	65.0	6.2
Friend	Child	29	16.3	16.0	12.0	20.0	2.3	0.248
	Adolescent	40	15.5	16.0	10.0	20.0	2.4
	Total	69	15.9	16.0	10.0	20.0	2.4
School	Child	29	14.3	14.0	8.0	20.0	3.0	0.059
	Adolescent	40	13.0	14.0	8.0	16.0	2.1
	Total	69	13.5	14.0	8.0	20.0	2.6
Total Quality of Life	Child	29	94.6	96.0	77.0	115.0	10.4	0.197
	Adolescent	40	91.6	91.0	66.0	141.0	12.5
	Total	69	92.8	92.0	66.0	141.0	11.7

Table 2.

Comparison of the mean values of generic health-related quality of life (QL) scale (Kid_KINDL) findings between child and adolescent groups.

SD standard deviation.

Parameter	Group	n	Mean	Median	Minimum	Maximum	SD	p-value
Coopersmith Self-Esteem Scale	Child	29	28.0	29.0	0.0	39.0	6.7	0.006*
	Adolescent	40	25.8	25.0	19.0	34.0	3.5
	Total	69	26.8	26.0	0.0	39.0	5.2
Children’s Depression Scale	Child	29	10.8	9.0	3.0	27.0	6.7	0.221
	Adolescent	40	8.6	7.0	2.0	21.0	5.0
	Total	69	9.5	8.0	2.0	27.0	5.9

Table 3.

Comparison of mean values of Coopersmith self-esteem and children’s depression scale findings between child and adolescent groups.

*

significant at the 0.05 level; SD standard deviation.

In the Depression Scale for Children, those with a scale score of 19 or higher were considered pathological [32]. According to this data, the scale scores of children and adolescent groups with CL/P did not show any pathology in terms of depression. There was no significant difference between children and adolescent groups in terms of depression scores (p > 0.05) (Table 4).

Value of Depression	Mother of Child		Mother of Adolescent		Total
	n	%	n	%	n	%
0–9 (Normal)	5	17.2	14	35	19	27.5
10–18 (mild-depression)	5	17.2	8	20	13	18.8
19–29 (moderate depression)	14	48.3	16	40	30	43.5
30–63 (severe depression)	5	17.2	2	5	7	10.1
Total	29	100	40	100	69	100
		Beck Depression Value
Group	N	Mean	Median	Min-Max	SD	p-value
Mother of Child	29	21.41	22	2.00–43.00	10.82	0.032*
Mother of Adolescent	40	15.28	15.5	0.00	9.47
Total	69	17.86	20	0	10.44

Table 4.

Distrubution of Beck depression scale findings and comparison of the mean values of Beck depression findings between mothers of child and adolescent groups.

*

significant at the 0.05 level; SD standard deviation; Min minimum; Max Maximum.

6.2 Results regarding the assessment of Beck depression inventory applied to mothers

The mothers of children were found to have mostly moderate depression. Mild and severe depression rates were equal in this group. Mild depression rates were higher in the mothers of adolescents compared to the mothers of children (Table 4). According to Beck Depression Inventory scores, Beck Depression Inventory scores were significantly higher in the mothers of children than the mothers of adolescents. (p < 0.05) This finding indicates that the mothers of children are more prone to depression (Table 4).

6.3 Results regarding the assessment of SF-36 quality of life scale applied to mothers

There was no significant difference between the groups in terms of the scores in the SF-36 Quality of Life scale. (p > 0.05) (Table 5). In the study of Aydemir et al. [37], when the SF 36 community standard values were compared with the findings in this study, it was seen that the “Emotional Role Difficulty” and “Social Functioning” scores were below the average of the social standards in both groups.

Variable	Groups	n	Mean	Median	Minimum	Maximum	SD	p-value
Physical Function	Mother of Child	29	75.52	80	25	100	22.21	0.396
	Mother of Adolescent	40	73.13	80	15	100	20.65
	Total	69	74.13	80	15	100	21.2
Physical Role Difficulty	Mother of Child	29	68.1	75	0	100	31.97	0.321
	Mother of Adolescent	40	75.63	75	0	100	29.14
	Total	69	72.46	75	0	100	30.36
Emotional Role Difficulty	Mother of Child	29	68.97	66.67	0	100	36.66	0.979
	Mother of Adolescent	40	70.83	66.67	0	100	32.19
	Total	69	70.05	66.67	0	100	33.89
Energy/Vitality	Mother of Child	29	57.59	55	25	90	17.81	0.771
	Mother of Adolescent	40	56.25	55	20	90	18.04
	Total	69	56.81	55	20	90	17.82
Mental Health	Mother of Child	29	69.1	72	32	100	20.42	0.798
	Mother of Adolescent	40	70.5	68	44	96	15.18
	Total	69	69.91	68	32	100	17.44
Social Functionality	Mother of Child	29	67.24	75	12.5	100	22.51	0.604
	Mother of Adolescent	40	70	75	12.5	100	23.31
	Total	69	68.84	75	12.5	100	22.85
Pain	Mother of Child	29	68.02	67.5	0	100	24.43	0.451
	Mother of Adolescent	40	71.94	77.5	10	100	21.16
	Total	69	70.29	67.5	0	100	22.5
General Health	Mother of Child	29	60.63	58.33	29.17	87.5	16.8	0.421
	Mother of Adolescent	40	57.08	58.33	20.83	87.5	14.71
	Total	69	58.57	58.33	20.83	87.5	15.6

Table 5.

Comparison of the mean values of SF 36 quality of life scale findings between mothers of child and adolescent groups.

SD standard deviation.

6.4 Results regarding the assessment of Rosenberg self-esteem scale applied to mothers

According to the results of the Rosenberg Self-Esteem Scale in Table 6 and the comparison between the groups, no significant difference was observed between the groups of the mothers of children and adolescents (p > 0.05). Except for the subscales of D3 – Trust in people, D4 – Sensitivity to criticism, D6 – Fancifulness, it was seen that the mothers of children obtained higher scores than the mothers of adolescents, but this difference was not statistically significant.

Variable	Group	n	Mean	Median	Min	Max	SD	p-value
Self-respect	Mother of Child	29	0.86	0.75	0	2.41	0.6	0.991
	Mother of Adoles.	40	0.83	0.75	0	2.25	0.56
	Total	69	0.84	0.75	0	2.41	0.57
Continuity of Self-Concept	Mother of Child	29	2.97	3	1	5	1.21	0.707
	Mother of Adoles.	40	2.83	3	0	5	1.2
	Total	69	2.88	3	0	5	1.19
Trust in People	Mother of Child	29	1.52	1	0	3	0.83	0.575
	Mother of Adoles.	40	1.65	1	0	3	0.83
	Total	69	1.59	1	0	3	0.83
Sensitivity to Criticism	Mother of Child	29	1.72	2	1	3	0.53	0.927
	Mother of Adoles.	40	1.73	2	1	2	0.45
	Total	69	1.72	2	1	3	0.48
Depressive Affect	Mother of Child	29	1.93	2	0	6	1.56	0.891
	Mother of Adoles.	40	1.83	2	0	4	1.2
	Total	69	1.87	2	0	6	1.35
Imagination	Mother of Child	29	0.45	0	0	3	0.78
	Mother of Adoles.	40	0.5	0	0	4	0.93	0.994
	Total	69	0.48	0	0	4	0.87
Psychosomatic Symptoms	Mother of Child	29	3.72	2	0	10	3.19	0.844
	Mother of Adoles.	40	3.4	3	0	10	2.66
	Total	69	3.54	3	0	10	2.88
F. Threats in Interpersonal Relationship	Mother of Child	29	1.69	2	0	3	1.04	0.098
	Mother of Adoles.	40	1.28	1.5	0	3	1.04
	Total	69	1.45	2	0	3	1.05
Degree of Participation in Discussions	Mother of Child	29	0.62	0	0	2	0.73
	Mother of Adoles.	40	0.5	0	0	2	0.64	0.525
	Total	69	0.55	0	0	2	0.68
Parental Interest	Mother of Child	29	1.55	1	0	8	2.06
	Mother of Adoles.	40	1.4	0.5	0	7	1.88	0.815
	Total	69	1.46	1	0	8	1.94
Relationship with Father	Mother of Child	29	2	1	0	6	1.91	0.227
	Mother of Adoles.	40	1.33	1	0	5	1.27
	Total	69	1.61	1	0	6	1.59
Psychic Isolation	Mother of Child	29	0.41	0	0	2	0.57
	Mother of Adoles.	40	0.48	0	0	2	0.72	0.961
	Total	69	0.45	0	0	2	0.65

Table 6.

Comparison of mean values of Rosenberg self-esteem scale findings between mothers of child and adolescent groups.

*significant at the 0.05 level; SD standard deviation; Min minimum; Max Maximum; Adoles. Adolescent.

In this scale consisting of 12 sections, there was no significant difference between the groups, while the sections of D1 – Self-esteem, D2 – Self-concept continuity and D3 – Trust in people were found to be at a high level in both groups. Sensitivity to criticism (D4), depressive affect (D5) and fancifulness (D6) were found to be at a low level in both groups. Both groups had moderate psychosomatic symptoms (D7). Both groups were found to feel a low level of threat in their interpersonal relationships (D8) and their degree of participation in discussions (D9) was low. Parental interest (D10) levels were found to be high in both groups, while relationship with the father (D11) was found to be at a low level (Table 6). When the mean values of the Rosenberg Self-Esteem Scale and the values of this study were compared for the women given in Table 6, similar scores were found in all other subscales except the Relationship with the Father subscale (D11). According to the mean values of the women, the relationship with the father, which is the D11 subscale, was moderate, yet it was found that there was a low level of relationship in this study. Psychical isolation (D12) was found to be low in both groups.

According to the Pearson’s correlation analysis between the D1 subscales and other subscales, Self-esteem (D1) and Depressive affect (D5) and Psychical isolation (D12) have a similar and low-level relationship. (p < 0.05) D1 and D12 scores increased as D1 scores increased. According to these findings, it was concluded that as self-esteem decreased, depressive affect and psychical isolation increased.

7. Discussion

Cleft lip and palate (CL/P) is a common congenital anomaly that affects the structure of the lip and/or the roof of the mouth. The psychosocial implications of CL/P can be significant, and research has explored various aspects of the psychosocial development of individuals with CL/P and their families. However, the role of age in the psychosocial development of CL/P patients and their mothers is not fully understood.

The psychological and social effects of deformity in individuals with CL/P have been studied since the 1960s. Less self-esteem, difficulty in learning and tendency to be more depressed and anxious were found in individuals with CL/P [38]. In this study, three questionnaires were applied to individuals with CL/P and their mothers, and their quality of life, self-esteem and depression levels were examined psychosocially in three different aspects. To the best of our knowledge, there are no studies in the literature addressing the psychosocial status of individuals in a large scale and in several dimensions as in this study. In addition, a limited number of studies conducted in Turkish society examined the psychosocial status of either individual with CL/P or only their families [39, 40]. However, there are no previous studies examining both individuals with CL/P and their mothers. Therefore, this study aimed to include both individuals with CL/P and their mothers.

Several studies have suggested that psychosocial functioning may be influenced by age in CL/P patients and their mothers. For example, a study by Sischo et al. [4]found that older children with CL/P had poorer self-esteem than younger children. Similarly, a study by Marques et al. [5] found that mothers of younger children with CL/P had higher levels of anxiety and depression than mothers of older children. These findings suggest that age may play an important role in the psychosocial development of CL/P patients and their mothers. However, some studies have reported contradictory or inconclusive results regarding the relationship between age and psychosocial functioning in CL/P patients and their families. For instance, a study by Richman and Eliason [41] found no significant difference in self-esteem between younger and older adolescents with CL/P. Similarly, a study by O'Brien et al. [42]found no significant relationship between age and maternal anxiety or depression.

Overall, the literature suggests that the relationship between age and psychosocial functioning in CL/P patients and their mothers is complex and may be influenced by various factors, such as the severity of the cleft, the timing of surgical interventions, and the presence of comorbidities. Further research is needed to clarify the role of age in the psychosocial development of individuals with CL/P and their families.

8. Case selection

In this study, no significant socioeconomic differences were found between the two age groups. In the study of Clark et al. [43], the relationship between the prevalence of CL/P and socioeconomic status could not be revealed. There is limited data about this relationship; therefore, furthermore research would provide better knowledge.

In this study, individuals with CL/P were divided into two groups at different age ranges, but no gender differentiation was made between the individuals. In a survey conducted by Bos and Prahl [44] to evaluate the quality of life of individuals with CL/P, no significant difference was found between males and females in quality of life levels. However, in the sample group where the age range was determined to be 8–15 years, the quality of life and emotional well-being of individuals aged 12 years and over were found to be lower than those of younger age groups. This indicates that quality of life levels change with age [44].

According to the survey conducted by Al-Ghamdi et al. [45], almost half of the parents who care for individuals with CL/P have difficulty managing their homes. In addition, it was reported that 50% of the parents were depressed before the treatment of their children, yet after the treatment, most parents had improved depression levels and only 11.9% had the same depression level. Based on these data, individuals in our study were examined in two age groups, including the groups of children (6–12 years) and adolescents (13–18 years). Mothers were also included in the study because usually mothers take care of the children and spend more time with their children.

8.1 Generic health-related quality of life for children

In this study, no statistically significant difference was found between the groups in any dimension (physical well-being, emotional well-being, self-esteem, family, friends and school) of the KINDL questionnaire used to evaluate the quality of life of individuals with CL/P. Similarly, there was no significant difference between groups in total quality of life. Also, quality of life scores of individuals with CL/P were found to be close to the normal values determined for Turkish society. These positive results can be explained by the quality of the team caring for them and the ability of these individuals to accept and cope with their situation.

Similar to our study, Naros et al. [46] applied the age-specific KINDL scale to 134 participants (47.8% of whom were females) aged 4–18 to evaluate the quality of life of individuals with CL/P in their study. In this study, compared with the normative data of surprisingly healthy individuals, higher quality of life was found in individuals with CL/P. However, the low rate of return of the questionnaires submitted caused bias in the results. Considering this situation, it was concluded that the quality of life in individuals with CL/P was not significantly lower than in healthy children.

In a survey conducted by Rivaldo et al. [47] to evaluate the quality of life of 94 individuals with cleft lip and palate aged 12 years and over, lower quality of life scores were reported by women or older individuals [47].

In a survey conducted by Ward et al. [48], which was applied to 75 individuals with CL/P (with a mean age of 13 years) and their caregivers and control group consisting of 75 healthy individuals (with a mean age of 13.9 years), generic oral health-related quality of life scores of children with CL/P were significantly lower than those of the control group. In addition, the negative effects of the orofacial cleft on quality of life scores were reported to be higher in individuals between the ages of 15–18 compared to the younger individuals.

8.2 Coopersmith self-esteem inventory

The Coopersmith Self-Esteem Inventory (CSI) has become the most popular instrument for measuring self-esteem both in our country and in the world. The Turkish version of the inventory was found to be consistent with the original scale [49]. When the findings of the Coopersmith Self-Esteem Inventory were evaluated, low self-esteem levels were found in both groups according to norm values. At the same time, self-esteem scores in the adolescent group were found to be significantly lower than the children group. Individuals with CL/P may have difficulty in expressing themselves in school life and speaking in public compared to normal individuals. This may affect their self-esteem negatively. In adolescence, individuals’ awareness about themselves increases and social and emotional relationships with the environment increase. Therefore, low self-esteem levels are an expected result in the adolescent group.

In a survey conducted by Noor and Musa [14] on 60 individuals (12–17 years of age) with CL/P and their parents, it was reported that individuals with CL/P were mocked for their speech, teeth and lip appearance. It was shown that this situation has a negative effect on self-esteem, with a similar result in our study. In addition, cleft patients aged 16–17 thought that their self-confidence was more affected by their condition than younger individuals as they mature toward adulthood at these ages and interactions with the opposite sex are compulsory for them. Parents of these individuals also reported that cleft lip and palate caused mockery and negatively affected their children’s self-esteem. It was stated that the most important features for individuals and their parents were teeth, nose, lip and speech, respectively, in descending order of priority.

In their study, Andrade and Angerami [50] measured self-esteem levels of 608 adolescents (17–20 years of age), 235 of whom were individuals with CL/P and 373 of them were normal individuals. Similar to our study, it was demonstrated that adolescents with CL/P behave differently from normal individuals and have lower self-esteem scores.

In a study by Gussy and Kilpatrick [10] comparing 23 adolescents with CL/P and control groups, no significant difference was found between the self-concept of individuals with CL/P and control groups.

8.3 Depression scale for children

The Depression Scale for Children, which was prepared by Kovacs [29], is based on Beck Depression Inventory and includes questions related to childhood depression, specific school status and friendship. This scale is the most commonly used scale in childhood depression, of which psychometric properties have been investigated most [32]. According to the findings of this scale, no significant difference was found between the children and adolescents in terms of depression scores. The fact that depression scores in both groups are within normal values can be explained by the individuals’ good adaptation to their condition.

In the study of Fadeyibi et al. [51], in order to investigate the psychosocial status of 116 individuals with CL/P under the age of 6 and between the ages of 6–12, the responses of CL/P patients were evaluated by their parents. It was shown that individuals with CL/P have a high level of anxiety, depression and deterioration in general well-being. In the 6–12 age group, the effects were reported to be higher.

In a survey conducted by Berk et al. [16] on 85 Chinese adult individuals with CL/P and 85 healthy individuals, it was demonstrated that adult individuals with CL/P had significantly higher social anxiety and lower self-esteem scores than the control group.

As a result of their meta-analytical study on adolescents and adults with CL/P (2276) in non-Anglo populations, Hutchinson et al. [52] indicated that males with CL/P are more prone to psychosocial problems than females, and adults are more prone to psychosocial problems compared to adolescents. In general, it was determined that individuals with CL/P show lower psychosocial development than normal individuals, regardless of age, gender or culture.

8.4 SF-36 quality of life scale applied to mothers

SF-36 [53], which was developed in order to evaluate the quality of life, is a short yet comprehensive, strong, general health questionnaire in terms of psychometric properties [54]. It is used to compare the effects of the disease and the benefits of different treatments in all age, disease and treatment groups. To date, it has been widely used in the general population [54]. Its reliability and validity study was conducted in Turkey [55]. When the subscales were evaluated, no statistically significant difference was found between the groups of the mothers of children and adolescents. In general, when the norm values of the SF-36 Scale for Turkish society were examined, all the remaining subscales were within the norm values except for the social functionality subscale in the mothers of children and adolescents with CL/P. Since the individuals with CL/P require almost lifelong multidisciplinary teamwork, families have to spend more time with their children, which leads to lower social activity and lower energy. Therefore it was an expected result that mothers’ energy/vitality and related social functionality scores would be low.

In the study conducted by Aslan et al. [39], family functions and quality of life of the parents having children with CL/P were evaluated and compared with a normal group. In the study, parents were grouped according to the children’s age ranges as 0–6, 7–12 and 13–18, and no significant differences were detected in the quality of life of parents between the CL/P and control groups in 0–6 and 7–12 age groups. However, it was reported that quality of life scores in physical, social and psychological fields was lower in the parents of adolescents with CL/P between the ages of 13–18 compared to the control group.

Antunes et al. [56] found that the quality of life of the families having children with CL/P (4–17 years) was negatively affected compared to the control group because they had to spend more time with their children. When the quality of life of the families of children with CL/P was compared according to the visibility of the deformity, the differences were found to be insignificant.

Crerand et al. [57] reported that stress factors such as the experience of having a child with CL/P could offer opportunities for the formation of protective factors that can improve families’ resilience (for example, low levels of family conflict, healthy adjustment and expression).

In a study by Tobiasen and Hiebert [58], it was found that parents of the children with CL/P were significantly more tolerant toward behavioral problems in their children compared to parents of normal children. This result revealed that families having children with CL/P develop strategies to solve problems since they face many problems and stresses from the birth of their children.

In the pilot study by Eiserman [59], it was reported that parents of children with CL/P had positive outcomes such as empathy and increased sensitivity to others, ability to help, closer relationships and acceptance of life challenges, improved communication skills and greater adaptation.

In a study conducted by Baker et al. [60] in order to examine the coping strategies and psychological discomfort levels of 103 families having children with CL/P, the parents were divided into three groups according to the age range of their children (0–6 years, 7–12 years and 13–18 years). It was demonstrated that families with young children were affected more depending on age. This situation was explained by the necessity of more comprehensive treatment, more frequent surgical intervention and clinical visits at younger ages.

8.5 Rosenberg self-esteem scale applied to mothers

In this study, self-esteem levels were high and depressive effect levels were low in both groups and no significant difference was found between the groups of the mothers of children and adolescents.

According to the results of the survey conducted by Weatherley-White et al. [61] on 52 families in India, 64% of the parents stated that their children’s social interaction was not restricted and they were not ashamed of this situation, while 26% stated that they imposed some restrictions and 10% stated that they completely isolated their children from the society and did not allow them to go out of the house or go to school. The responses of the majority of the parents in this study are similar to the subscales of the high level of self-esteem (D1), low level of depressive effect (D5), high level of trust in people (D3) and low level of sensitivity to criticism (D4) in our study.

8.6 Beck depression inventory applied to mothers

The Beck Depression Inventory was found to be a reliable scale that can be applied in a short time, of which reliability and validity study was conducted in Turkey [62]. In this study, it was found that mothers of children were significantly more prone to depression than mothers of adolescents. It is an expected result as mothers of children with CL/P are more concerned with the care of their children and more frequent surgical intervention and physician control are required in individuals of this age.

We have not met any studies evaluating depression levels in children and adolescents with CL/P and/or their parents. In other studies regarding depression, stress levels of families of individuals with CL/P in prenatal or infancy period before or after surgery were evaluated.

In the study of Nelson et al. [63], anxiety, depression and perceived stress levels of parents having 12–24 months old babies with CL/P were evaluated. Authors reported that anxiety and perceived stress scale were significantly higher in parents who blamed themselves for this condition in their babies; however, depression scores were not significantly higher [63].

O’Hanlon et al. [64] investigated the effects of prenatal diagnosis of CL/P in their parents. According to the results, these parents were found to feel significantly more guilty compared to the parents in the control group.

In the study of Tabaquim and Marquesini [19], the stress levels of the mothers and fathers before surgery of CL/P patients were evaluated, and it was revealed that stress level was high in 21.4% of the parents, moderate in 28.6% and low in 50% before surgery. On the other hand, stress level was high in 7.1%, moderate in 21.4% and low in 71.4% of parents after surgery.

It is reported that parents are concerned about operations, physical appearance and social functionality [17]. Therefore parents should be informed about how to communicate with their children with CL/P and what types of surgeries and medical procedures they will undergo in the future [65].

8.7 Limitations of the study

In our study, the cleft type of patients was not classified because of the limited number of isolated palatal or lip cleft cases. Further studies with increased number of patients would be better to investigate the impact of the type of cleft on the psychosocial functioning of both patients and their parents. In addition, the mothers of individuals with CL/P should be compared with control group mothers. Finally, this study identifies the psychosocial functioning among patients with CL/P and their mothers at only one point of time study. Long-term evaluation will provide us better understanding of whether issues regarding psychosocial functioning change over time.

9. Conclusion

In this study, the following results were obtained:

There was no significant difference in terms of quality of life between the groups of children and adolescents with CL/P, and the mothers of children and adolescents. Quality of life levels were found to be close to the mean values for both individuals with CL/P and their mothers.

Low self-esteem levels were determined in both children and adolescents with CL/P. Self-esteem level of the adolescent group was significantly lower than the children group.

Self-esteem levels were not found to be significantly different between the mothers of children and the mothers of adolescents. High self-esteem levels were observed in both groups.

No significant difference was found between the children and adolescents in terms of depression scores.

Beck Depression Inventory scores were higher in the mothers of children than the mothers of adolescents. This result indicates that the mothers of children with CL/P are more prone to depression.

Psychosocial and behavioral problems may occur in children and adolescents with CL/P due to their deformities. In addition to treatment for the deformities and functions of individuals with CL/P, good psychological support is needed to improve their psychosocial status. In addition, healthy individuals should be informed appropriately in order to prevent situations such as mocking, bullying and stigmatization that cause psychosocial and behavioral problems and to change society’s perspective and prejudice against these individuals with CL/P.

While each family needs to be evaluated within itself, mothers who take care of individuals with CL/P should be properly and thoroughly informed by the multidisciplinary team about the situation and care of their children. Appropriate psychosocial support is required to reduce stress and depression levels in mothers.

Acknowledgments

The authors would like to thank Prof. Dr. Ayşe Gülşen for their thoughtful suggestions regarding both the development of this project and revision of this manuscript. In addition, the authors would like to thank the participants and their families for their significant contribution to this study.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

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