Quality of Life of Mothers of Children born with Cleft Palate in Jordan

doi:10.21203/rs.3.rs-2611446/v1

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Quality of Life of Mothers of Children born with Cleft Palate in Jordan

https://doi.org/10.21203/rs.3.rs-2611446/v1

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The purpose of this paper was to investigate sociodemographic predictors of quality of life of mothers of children with cleft palate, and to compare quality of life between mothers of children without cleft palate and those of children without cleft palate in Jordan. A cross-sectional correlational study was conducted at one specialized Cleft Palate Unit using convenience sample of 312 mothers of children with and without cleft palate. The study used a self-reported questionnaire of two parts; socio-demographic; and WHOQOL- BREFF, Arabic version respectively. Analysis revealed that there was significant difference in environmental quality of life between mother with cleft palate child and those without cleft palate child. Mother’s physical quality of life was significantly predicted by their age, and educational level. Mother’s environmental quality of life was significantly predicted by their social status, and educational level. in conclusion mothers of children with CLP need psychosocial support at societal and institutional levels. Counselling and enhancement of positive coping mechanism are among the most important topics to be addressed to improve mothers' quality of life.

Biological sciences/Psychology

Health sciences/Health care

Cleft Palate (CLP) is a congenital birth defects of the face that occurs during the first trimester of the pregnancy where baby’s lip or mouth does not form properly during embryogenesis [1]. Birth prevalence of CLP vary around the world; it is estimated that birth prevalence of CLP ranges from 0.2 to 2.3 per 1000 births [1]. Children with CLP, due to long term multiple operations and non-surgical interventions, have poor perceptions of themselves and their appearances, are prone to long-term consequences of psychosocial issues [2; 3]. CLP is not merely affecting the bio-psychosocial wellbeing of children, it is also affecting families [4]. In most cases of children with CLP, mothers are the primary caregivers making them most vulnerable to psychological and social disturbances due to burden of the disease process and the overwhelming and long terms treat plans [5]. The literature asserted that mothers of children with CLP are suffering negative feelings, disturbed behaviours, emotional stress, and interruption in their ability to fulfill their responsibilities towards the other family members [5]. Such a situation is expected to affect negatively the mothers’ quality of life. The effect of CLP on children and their parents do warrant healthcare professionals and researchers to question the impact of CLP on quality of life and other bio-psychosocial components of children and their mothers’ health and wellbeing.

Although caring of children seems the main responsibility for mothers, having a child with CPL would challenge mothers’ ability to adapt to the over demanding situation and the long-standing medical and surgical needs for their children [5]. Furthermore, it has been reported that, and due to overwhelming stressful situation and low quality of life, experience pain, decreases energy and vitality, disturbs physical functioning and disabilities causing them more deterioration in their general wellbeing [6]. Mothers of CLP children found to experience high stress, high anxiety, emotional strain and sadness [7; 8]. The lived experience of mothers with CLP and the psychosocial disturbances, as aforementioned, assumed to influence mothers’ ability to manage her and their children’s needs. This would lead to speculate that wellbeing and quality of life of mothers of children with CLP is compromised.

Several studies explored the relationships between the socio-demographic variables and the QoL of mothers of children with CLP. Al- Namankany and Alhubaishi (2018), for example, found that socio-demographic factors do play a significant role in determining the quality of life for mothers of children with CPL. In contrast, others found that QoL was not affected by maternal age, marital status, and educational level [5; 9; 10]. such controversial repots would call for investigating further the connection between socio-demographic factors and QoL of mothers of children with CLP. Despite the great burden that mothers suffer while caring for their children with CLP, few studies investigated their QoL (i.e. physical, psychological, social and environmental domains. This topic is one ignored topic in pediatric and mothers’ studies in Jordan. thus, investigation the relationship between certain social and demographic characteristics of mothers of children with CLP and comparing that with mothers of children without CPL would allow better underrating of the current issue. This will help differentiate between the general burden of disease and caregiving among mother of sick children and those with children with CLP. The current study aimed to explore the QoL (i.e. physical, psychological, social and environmental domains) of mothers of children with CLP and compare it with mothers of children without CLP in Jordan. The research questions were: 1)To examine the QoL of mothers of children with CLP and mothers of children without CLP in Jordan. 2)To examine the differences in physical, psychological, social, and environmental domains of QoL between mothers of children with and without CLP in Jordan. 3)To examine the differences in emotional and social concerns between mothers of children with and without CLP in Jordan.

Demographic characteristics

A total number of 312 mothers responded and filled out the surveys where 50% (n = 156) were from mothers of children with cleft palate and 50% (n = 156) from mothers of children without cleft palate (Table 1). The majority (83.8%, n = 168) of the mothers were at 30–39 years of age. About 42% (n = 132) were housewives, 29.2% (n = 91) were working in health-related jobs, and 13.5% (n = 42) were school teachers.

Table 1

demographic data
Variables		With cleft palate		Without cleft palate		Total
Variables		n	%	n	%	n	%
Age	20–29	52	33.3	30	19.2	82	26.3
	30–39	76	48.7	92	59.0	168	53.8
	40–49	21	13.5	30	19.2	51	16.3
	50–59	5	3.2	3	1.9	8	2.6
	< 20	2	1.3	1	0.6	3	1.0
Educational level	Elementary	9	5.8	1	0.6	10	3.2
	Illiterate	6	3.8	1	0.6	6	1.9
	Secondary	14	9.0	8	5.1	15	4.8
	High school	53	34.0	146	93.6	61	19.6
	University	74	47.4	1	0.6	220	70.5
Monthly income	< 400	69	44.2	13	8.3	82	26.3
	400–700	57	36.5	70	44.9	127	40.7
	> 700	30	19.2	73	46.8	103	33.0
Social status	Married	150	96.2	152	97.4	302	96.8
	Divorced	5	3.2	3	1.9	8	2.6
	Widow	1	0.6	1	0.6	2	.6
Occupation	Housewife	106	67.9	25	16.0	131	42.0
	Teaches	21	13.5	21	13.5	42	13.5
	Health	14	9.0	77	49.4	91	29.2
	Management	9	5.8	12	7.7	21	6.7
	Other	6	3.8	21	13.5	27	8.7
Living place	Amman	27	17.3	74	47.4	101	32.4
	Irbid	39	25.0	3	1.9	42	13.5
	Ajloun	9	5.8	5	3.2	14	4.5
	Mafraq	10	6.4	1	0.6	11	3.5
	Zarqaa	18	11.5	8	5.1	26	8.3
	Maan	5	3.2	2	1.3	7	2.2
	Madaba	5	3.2	5	3.2	10	3.2
	Balqaa	12	7.7	9	5.8	21	6.7
	Tafelieh	4	2.6	21	13.5	25	8.0
	Jerrash	11	7.1	8	5.1	19	6.1
	Karak	11	7.1	17	10.9	28	9.0
	Aqaba	5	3.2	3	1.9	8	2.6
Number of household children	1–2	70	44.9	79	50.6	149	47.8
	3–4	70	44.9	55	35.3	125	40.1
	5–6	13	8.3	17	10.9	30	9.6
	7–8	3	1.9	5	3.2	8	2.6

Mothers' Quality Of Life

Mothers of children with cleft palate

A total score for each domain of quality of life was calculated to determine the direction of mothers' quality of life. Using interquartile equation, the analysis regarding physical wellbeing domain showed that 50% of the mothers had a score of 62.5, and 25% of the mothers had a score of 71.43 or higher. This indicates that, given the expected range of scores up to 100, mothers had moderate to high level of physical wellbeing. This has been supported with a 75% of the mothers scoring 46.43 or higher.

Also, regarding psychological wellbeing domain, 50% of the mothers had a score of 50, and 25% of the mothers had a score of 62.5 or higher. This indicates that, given that the expected range of scores is up to 100, mothers had moderate to high level of psychological wellbeing. This has been supported with a 75% of the mothers scoring 45.83 or higher.

Regarding social wellbeing domain, 50% of the mothers had a score of 66.67, and 25% of the mothers had a score of 75 or higher. This indicates that, given that the expected range of scores is up to 100, mothers had high level of social wellbeing. This has been supported with a 75% of the mothers scoring 58.33 or higher. Regarding environmental wellbeing, 50% of the mothers had a score of 53.13, and 25% of the mothers had a score of 62.5 or higher indicating that mothers had moderate to high level of environmental wellbeing supported with 75% of the mothers who had scored 40.63 or higher.

Mothers of children without cleft palate

The analysis (Table 2) regarding physical wellbeing domain showed that 50% of the mothers had a score of 64.29, and 25% of the mothers had a score of 71.43 or higher indicating high level of physical wellbeing. While their score related to psychological wellbeing domain indicated moderate to high level with 50% of the mothers scored 54.17, and 25% of the mothers had a score of 69.79 or higher. Their social wellbeing was also high with 50% of the mothers had a score of 75 or higher and 75% of them scored 50 or higher, while had moderate to high level of environmental wellbeing with 50% of them score of 59.38, and 25% of the mothers had a score of 67.97 or higher.

Table 2

Quality of life of mothers of children with and without cleft palate
Children’s with cleft palate mothers Quality of life
Quality of life variables	M	SD	Min	Max	P25	P50	P75
Physical domain	59.75	17.67	21.43	96.43	46.43	62.50	71.43
Psychological domain	54.22	16.79	16.67	91.67	45.83	50.00	62.50
Social domain	64.16	17.63	0	100.00	58.33	66.67	75.00
Environmental domain	51.18	15.73	18.75	87.50	40.63	53.13	62.50
Children’s without cleft palate mothers Quality of life
Physical domain	62.34	14.23	25.00	96.43	53.57	64.29	71.43
Psychological domain	56.09	15.13	25.00	87.50	45.83	54.17	69.79
Social domain	63.94	20.28	8.33	100.00	50	75.00	75.00
Environmental domain	57.47	13.52	13.50	90.63	46.88	59.38	67.97

Difference In Quality Of Life Domains Related To Socio-demographics

Results revealed that there was a significant difference between mothers in different age groups (F = 6.58, p < 0.001) in physical domain of quality of life and environmental domain of quality of life. (F = 2.89, p = 0.02). Also, the analysis revealed that mothers' education level contributed to differences in physical domain of quality of life (F = 6.58, p < 0.001), psychological domain of quality of life (F = 2.70, p = 0.03), and environmental domain of quality of life (F = 6.64, p < 0.001). Significant differences found in physical domain of quality of life (F = 3.58, p = 0.03) and environmental domain of quality of life (F = 20.19, p < 0.001).

Furthermore, there was a significant difference between mothers with different social status (F = 6.18, p = 0.03) in social quality of life and environmental domain quality of life (F = 5.31, p = 0.006). Moreover, analysis showed that educational level contributed significantly to differences there was a significant difference between mothers with different in physical quality of life (F = 2.97, p = 0.03) and social domain quality of life (F = 3.23, p = 0.01). In addition, there was a significant difference between mothers with different occupations (F = 6.78, p < 0.001) in environmental quality of life. Additionally, analysis disclosed that there was a significant difference between mothers with different living places (F = 2.14, p = 0.02) in environmental quality of life. Likewise, there was a significant difference between mothers with different number of household children (F = 3.39, p = 0.02) in physical quality of life.

Difference in quality of life domains between mothers of children with and without with cleft palate

Analysis, see Table 3, revealed that there was significant difference (t = − 3.79, p < 0001) in environmental domain of quality of life between mothers of children with and without cleft palate, with mean score for those of children without cleft palate (M = 57.47, SD = 13.52) higher than those with cleft palate (M51.18, SD = 15.73). However, there was no significant difference between mother of children with cleft palate and those without cleft palate in their physical, psychological, and social domain of quality of life (p < .05).

Table 3

Differences quality of life domains.
Variables	With cleft palate		Without cleft palate		t- test
Variables	M	SD	M	SD	t	p
Physical domain	59.75	17.67	62.33	14.23	− 1.42	0.15
Psychological domain	54.22	16.79	56.09	15.13	− 1.03	0.30
Social domain	64.10	17.62	63.94	20.28	0.07	0.49
Environmental domain	51.18	15.73	57.47	13.52	-3.79	< 0.001

Sociodemographic Predictors Of Quality Of Life Of Mothers Controlling For CLP Status

Sociodemographic predictors of mothers' physical wellbeing controlling for CLP status

Two- steps multiple hierarchical regression analysis was performed to examine prediction power of having or not having child with cleft palate controlling for selected demographic characteristics (age, living place, social status, occupation, number of children, monthly income, and educational level). The analysis (Table 4) showed that the model 1 that includes the selected demographics was significant (F = 5.465, p < 0.001) with R 2 = 0.112 (11.2%). Then in model 2 by selected demographics (age, gender, religion, monthly income, educational level, and receiving training), the model retrieved to be significant (F = 4.985, p < 0.001) with R 2 = 0.116 (11.6%). The R 2 change form model 1 to 2 was 0.004 (0.4%). The results indicate 11.6% of the variation in physical domain of quality of life are explained by the model 2 that contains working having or not having child with cleft palate controlling for the selected demographic characteristics. Also, 11.2% In of the variation in physical domain of quality of life are explained by the model 1 that contains the selected demographics.

Table 4

Social demographic predictors of physical quality of life
Variables	Model 1			Model 2
Variables	B	β	p	B	β	p
Age	− .255	− .078	.189	− .219	− .067	.264
Living place	− .035	− .053	.338	− .037	− .055	.318
Social status	− .978	− .085	.131	− .972	− .084	.133
occupation	− .008	− .004	.948	.040	.020	.760
Number of children	− .132	− .045	.431	− .125	− .042	.454
Monthly income	.596	.178	.005	.650	.194	.003
education	.460	.165	.011	.521	.187	.006
Cleft palate child				− .426	− .083	.214
R2	0.112			0.116
Model fit	F = 5.465, p < 0.001			F = 4.985, p < 0.001
R2 change				0.004

In model 2, monthly income was positive predictor (β = 0.194, p = 0.003). This indicates that the participants’ who have higher monthly income are more likely to have higher level of physical quality of life. Also, educational level was found to be positive predictor (β = 0.187, p = 0.006). This indicates that the participants’ who hold higher educational level are more likely to have higher level of physical quality of life.

Sociodemographic predictors of mothers' psychological wellbeing controlling for CLP status

Two- steps multiple hierarchical regression analysis was performed to examine prediction power of having or not having child with cleft palate controlling for selected demographic characteristics (age, living place, social status, occupation, number of children, monthly income, and educational level). The analysis (Table 5) showed that the model 1 that includes the selected demographics was significant (F = 2.755, p = 0.009) with R 2 = 0.060 (6%). Then in model 2 by selected demographics (age, gender, religion, monthly income, educational level, and receiving training), the model retrieved to be significant (F = 2.556, p = 0.010) with R 2 = 0.063 (6.3%). The R 2 change form model 1 to 2 was 0.003 (0.3%). The results indicate 6.3% of the variation in psychological domain of quality of life are explained by the model 2 that contains working having or not having child with cleft palate controlling for the selected demographic characteristics. Also, 6% In of the variation in psychological domain of quality of life are explained by the model 1 that contains the selected demographics.

Table 5

Social demographic predictors of psychological quality of life
Variables	Model 1			Model 2
Variables	B	β	p	B	β	p
Age	− .035	− .011	.860	− .003	− .001	.987
Living place	− .007	− .011	.842	− .009	− .013	.815
Social status	− .738	− .065	.265	− .732	− .064	.268
occupation	− .045	− .023	.728	− .002	− .001	.987
Number of children	.165	.056	.336	.171	.058	.320
Monthly income	.611	.184	.005	.658	.198	.003
education	.262	.094	.157	.315	.114	.100
Cleft palate child				− .376	− .074	.285
R2	0.060			0.063
Model fit	F = 2.755, p = 0.060			F = 2.556, p = 0.010
R2 change				0.003

In model 2 only monthly income was positive predictor (β = 0.198, p = 0.003). This indicates that the participants’ who have higher monthly income are more likely to have higher level of psychological quality of life.

Sociodemographic predictors of mothers' social quality of life controlling for CLP status

Two- steps multiple hierarchical regression analysis was performed to examine prediction power of having or not having child with cleft palate controlling for selected demographic characteristics (age, living place, social status, occupation, number of children, monthly income, and educational level). The analysis (Table 6) showed that the model 1 that includes the selected demographics was significant (F = 2.527, p = 0.015) with R 2 = 0.055 (5.5%). Then in model 2 by selected demographics (age, gender, religion, monthly income, educational level, and receiving training), the model retrieved to be significant (F = 2.615, p = 0.009) with R 2 = 0.065 (6.5%). The R 2 change form model 1 to 2 was 0.010 (1%). The results indicate 6.5% of the variation in social domain of quality of life are explained by the model 2 that contains working having or not having child with cleft palate controlling for the selected demographic characteristics. Also, 5.5% In of the variation in social domain of quality of life are explained by the model 1 that contains the selected demographics. In model 2, social status was negative predictor (β = -0.187, p = 0.001). This indicates that the divorced or widowed participants’ are more likely to have lower level of social quality of life. In addition, occupational status was positive predictor (β = 0.145, p = 0.035). This indicates that the participants’ who are working are more likely to have higher level of social quality of life.

Table 6

Social demographic predictors of social quality of life
Variables	Model 1			Model 2
Variables	B	β	p	B	β	p
Age	− .034	− .009	.887	.028	.007	.905
Living place	− .031	− .039	.494	− .033	− .042	.457
Social status	-2.545	− .187	.001	-2.534	− .187	.001
occupation	.255	.109	.096	.338	.145	.035
Number of children	− .007	− .002	.973	.005	.001	.982
Monthly income	.195	.049	.447	.286	.072	.272
education	− .018	− .005	.935	.086	.026	.704
Cleft palate child				− .733	− .121	.079
R2	0.055			0.065
Model fit	F = 2.527, p = 0.015			F = 2.556, p = 0.009
R2 change				0.010

Sociodemographic predictors of mothers' environmental quality of life controlling for CLP status

Two- steps multiple hierarchical regression analysis was performed to examine prediction power of having or not having child with cleft palate controlling for selected demographic characteristics (age, living place, social status, occupation, number of children, monthly income, and educational level). The analysis (Table 7) showed that the model 1 that includes the selected demographics was significant (F = 14.585, p < 0.001) with R 2 = 0.251 (25.1%). Then in model 2 by selected demographics (age, gender, religion, monthly income, educational level, and receiving training), the model retrieved to be significant (F = 12.783, p < 0.001) with R 2 = 0.252 (25.2%). The R 2 change form model 1 to 2 was 0.001 (1%). The results indicate 25.2% of the variation in environmental domain of quality of life are explained by the model 2 that contains working having or not having child with cleft palate controlling for the selected demographic characteristics. Also, 25.1% In of the variation in environmental domain of quality of life are explained by the model 1 that contains the selected demographics.

Table 7

Social demographic predictors of environmental quality of life
Variables	Model 1			Model 2
Variables	B	β	p	B	β	p
Age	.064	.021	.698	.080	.026	.635
Living place	− .043	− .069	.169	− .044	− .070	.163
Social status	-1.199	− .112	.031	-1.196	− .112	.031
occupation	.049	.027	.649	.069	.038	.538
Number of children	− .057	− .021	.689	− .055	− .020	.704
Monthly income	1.222	.392	< .001	1.245	.399	< .001
education	.341	.131	.028	.367	.141	.023
Cleft palate child				− .180	− .038	.539
R2	0.251			0.252
Model fit	F = 14.585, p < 0.001			F = 12.783, p < 0.001
R2 change				0.001

In model 2 social status was negative predictor (β = -0.112, p = 0.031). This indicates that the divorced or widowed participants’ are more likely to have lower level of environmental quality of life. In addition, monthly income was positive predictor (β = 0.399, p < 0.001). This indicates that the participants’ who have higher monthly income are more likely to have higher level of environmental quality of life. Also, monthly income was positive predictor (β = 0.141, p = 0.023). This indicates that the participants’ who have higher educational level are more likely to have higher level of environmental quality of life.

Cleft Palate (CP) is a congenital defect that affects not only the affected children but their parents and caregivers, as well. The literature is documenting that parents of children with CP are suffering from psychological disturbances such as anxiety and depression that, consequently, contributes to physical deterioration and victimization of the affected children [13]. This study aimed at examining the quality of life, psychological, and social wellbeing of mothers of children with CP and compare it those mothers of children without CP. We found that mothers of children with CP have moderate level of quality of life and higher levels of psychological and social disturbances. Factors such as anxious feeling, sad feeling, isolation, problems with social support, and worries about their child’s future have been reported at higher rates among mother of children with CLP than those for mothers of children without CP. The results indicate poor psychological and social wellbeing and poor quality of life of mothers of children with CP. Focusing on mothers in this study is coming due to the facts that mothers in the Arabian culture are the primary caregivers for their family members whom suffering medical or psychological disorders, and they are most affected family member with family member's disease and treatment process [14; 15; 16]. Such a concern will enable better understanding of the health-disease connection of caregivers.

This study also found that income, education and social status were significant predictors of quality of life for mothers with cleft palate. Across all sociodemographic characteristics, family income has been identified as one significant predictor of all domains of QoL. The higher the income indicated higher level of QoL. This indicates that the economic status of the family is one significant component in quality of life. Although all children have health insurance, and health care services are provided free of charge for them, it seems that the economic burden of children is related to their home care rather than the healthcare services. In general, motherhood is a challenge, and confronted with several socio-cultural, biological, and psychological difficult situations. Therefore, caring of a child with CP was assumed to cause deterioration of health and wellbeing of the primary caregivers. As assumed, mothers with children with CP had low scores of all domains of quality of life and high scores of psychological and social disturbances. The findings support previous reports and sustain the notion that mothers of children with CP are at higher risk to anxiety, depression and maladjustment problems due to increased physiological demands, and their inability to manage their children's needs [17; 18].

One significant contribution of this study is the comparison that we have conducted between mothers of children with CP and those without CP. Although results showed that mothers of children with CP had lower scores of all domain of quality of life and higher scores of psychological and social disturbances than mothers of children without CP, the differences in means does not reflect the significance statistical differences. In other words, there is a statistical difference found between mothers with or without child with CP; however, such difference is not clinically appraised. For both categories of mothers' quality of life, psychological and social disturbances are at the moderate level. This, first, confirms that motherhood is a real struggling experience, and second having children with physical defect such as CP is adding to their suffer causing more bi-psycho-social deterioration and poorer quality of life. The findings while supporting international reports, as aforementioned, are not adding to our understanding that the Arabian culture, that is supportive and where family bonds are enhanced during crises such as disease, is not adequately functioning to support mothers of children with CP. This could be due to many factors including the lack of knowledge about managing needs of children with CP and due to underestimation of the real physiological and psychological needs of mothers and their children with CP. Another explanation might be due to lack of appropriate communication and support that mothers are receiving from health professional during caring and treatment process of their children with CP which has been reported with other equivalent group of mothers of children with cancer [14] and those with family member of psychiatric disorders [15].

Mothers are expecting children and assumes positive situation that makes them unprepared for managing crises of their children illness. Yet, mothers of children with CP is commonly prepared for such physical defect prior birth time. Nevertheless, this might not guarantee that mothers and their children, later on, are willing to celebrate their experiences and enjoy the journey of motherhood and childhood due to physiological problems of child such as breastfeeding and psychological disturbances of the mothers. In addition, mothers who is the primary family caregiver will find difficult to take care of siblings of ill children causing further guilt feeling and burden. Such as experience is considered the primary sources for psychological disturbances and interfere with quality of life for others and their children.

The generalization of the current study's results need to be interpreted cautiously and as the data were collected from one center in Jordan. Although this is the only specialized center in the country; however, there are children with CLP whom receiving care at private and other public agencies.

Research Design

A cross-sectional correlational study design was used to investigate QoL of mothers with children with CLP in the Jordanian population. Data collected using self-administered questionnaire in relation to quality of life and sociodemographic characteristics. This design enables to find associations between QoL of mothers of children with CLP and different variables.

Study Setting And Sites

The current study was conducted at one national major specialized unit for CLP. It is important to mention that it is the only multidisciplinary cleft unit that provides highly comprehensive CLP care in Jordan and located in Amman.

Sample And Sampling

A convenience sampling technique was used in this the study. A total of 384 participants were approached with the response rate 81.3%. A sample size of 320 is calculated as an appropriate sample size, but it is recommended to increase the sample about 10 to 20% to compensate for any expected missing or withdrawals [11]. A total number of 312 mothers responded and filled out the surveys in which 50% (n = 156) were from mothers with children with cleft palate and 50% (n = 156) from mothers with children without cleft palate.

The inclusion criteria for Mothers of children with cleft palate were: 1. Jordanian mother who gives care to one or more CP children. 2. Be able to communicate verbally. 3. Be willing to participate in the study as a volunteer. 4. Able to read in Arabic. 5. Child age is 18 years old or lower at the time of study. Whereas the exclusion criteria were 1. Mothers with major physical illness affecting her QoL. 2. Mothers who are giving care to other children with other major physical illness and deformity apart from CLP. 3. Mother of a child who has chronic diseases.

The inclusion and exclusion criteria for Mothers of children without cleft palate 1. Jordanian mother who gives care to one or more children with no CP. 2. Be able to communicate verbally. 3. Be willing to participate in the study as a volunteer. 4. Able to read in Arabic. 5. Child age is 18 years old or lower at the time of study. 6. Child with no chronic disease or deformities. Whereas the exclusion criteria were: 1. Mothers with major physical illness affecting her QoL. 2. Mother of child who has deformities or chronic diseases.

Measurement

The questionnaire was composed of two parts; the first part consisted of socio-demographic details prepared in Arabic (age and type of jobs). The second part of the questionnaire focused on the QoL of mothers of children with CLP using WHOQOL- BREF Arabic version. This tool demonstrated high validity and reliability in which the internal consistency (Cronbach’s α) coefficients ranged from 0.70 to 0.77 for the four domains. The test–retest reliability coefficients with intervals of 2 to 4 weeks ranged from 0.41 to 0.79 at item/facet level and 0.76 to 0.80 at domain level (all p < 0.01) [12].

The WHOQOL-BREF is a 26-item, self-administered; it is a short version of the WHOQOL-100 scale. The instrument is organized into four domains of QoL. These are: physical domain; psychological domain; social relationships; and environment. Within each domain a series of sub-domains (facets) of QoL summarize that particular domain of QoL. The response options range from 1 (very dissatisfied/very poor) to 5 (very satisfied/very good). The WHOQOL-BREF produces four domain scores. There are also two items that are examined separately: question 1 asks about an individual’s overall perception of quality of life and question 2 asks about an individual’s overall perception of his or her health. Domain scores are scaled in a positive direction (i.e. higher scores denote higher quality of life). The mean score of items within each domain is used to calculate the domain score. Mean scores are then multiplied by 4 in order to make domain scores comparable with the scores used in the WHOQOL-100, and subsequently transformed to a 0-100 scale, using the formula transformed score= (score-4) x (100/16) (WHO, 1998).

Ethical Considerations

Institutional Review Board (IRB) approval was assured from The University of Jordan and the Jordanian Royal Medical Services Ethical Committee. The consent form was written in Arabic. The researcher explained the study purpose to the participants and gave a reasonable time (2–3 days) to consider study participation and ensure the voluntary participation. In the consent form the researcher ensured that the participation in this study is voluntary, and that each participant has the right to withdraw from this study at any time without being punished or compromised from their usual care. The researcher informed the participants that anonymity was maintained; patients were not asked to express or write their identifying data on the questionnaires. All gathered information was confidential and used only for the purpose of research.

No potential adverse effects, hazards or risks to the safety of the participants involved were anticipated. The participants were approached personally by the researcher and were encouraged to contact the researcher to discuss their concerns, but no patient contacted the researcher. The participants were informed how their data would be used in the participant information sheet. All methods were carried out in accordance with relevant guidelines and regulations.

Data Collection Procedures

After obtaining the approval from the ethical committee at the targeted institution, the researcher scheduled a meeting with the consultant physician and nursing supervisor in the study settings and discussed the nature of the study and the data collection processes. The data was collected by the researcher. The process of data collection took place in the doctor office, CLP clinic and CLP patient waiting area.

An appointment was arranged with the head nurse of CLP to introduce the study. Then, the head nurse arranged a convenient time for the mothers of children with CLP to meet with the researcher. The researcher approached the mothers either individually or as a group to explain the purpose of the study. Later, informed consent was obtained from all subjects. Those who were interested in participating in the study were asked to complete the questionnaires and offered help in completing the questionnaires. The mothers who completed the questionnaires themselves with no assistance, the researcher arranged to collect the completed questionnaires the next day. A special box in the CLP unit was available for the mothers to return the completed questionnaires if they wish to use it rather than return it in person to the researcher.

Analysis Plan

Variables of the study described using the central tendency measures (means, and medians) and the dispersion measures (standard deviation and ranges). A total score for each domain of quality of life was calculated to determine the direction of mothers Quality of life. One way ANOVA test was done to examine difference in physical, psychosocial, social, and environmental quality of life related to socio-demographics variables (age, level of education, and monthly family income). The t-test for two-independent samples has been used to test differences in quality of life and emotional concerns between mothers of children with cleft palate and those of children without cleft palate. Alpha has been set to .05 two-tailed level of significance and power of .80

Acknowledgements

The authors acknowledge that this research took place at the University of Jordan. Moreover, the authors grateful for the participants who took part in the current study.

Author contributions statement

B.Q. and Mutasem.E. conceived the experiment(s), B.Q. and Mamdouh.E. conducted the experiment(s), J.S. and A.M analysed the results. All authors reviewed the manuscript.

Additional information

Competing interests (The authors declare no conflict of interest).

Data availability

The data that support the findings of this study are available from correspondence author [Jumana shehadeh] but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. Data are however available from the correspondence author [Jumana shehadeh] upon reasonable request and with permission of [Buthainah Qatamin].

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No competing interests reported.

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Quality of Life of Mothers of Children born with Cleft Palate in Jordan

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Abstract

Introduction

Results

Demographic characteristics

Mothers' Quality Of Life

Mothers of children with cleft palate

Mothers of children without cleft palate

Difference In Quality Of Life Domains Related To Socio-demographics

Sociodemographic Predictors Of Quality Of Life Of Mothers Controlling For CLP Status

Sociodemographic predictors of mothers' physical wellbeing controlling for CLP status

Sociodemographic predictors of mothers' psychological wellbeing controlling for CLP status

Sociodemographic predictors of mothers' social quality of life controlling for CLP status

Sociodemographic predictors of mothers' environmental quality of life controlling for CLP status

Discussion

Methods

Research Design

Study Setting And Sites

Sample And Sampling

Measurement

Ethical Considerations

Data Collection Procedures

Analysis Plan

Declarations

References

Additional Declarations

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