Current Pediatric Research

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Research Article - Current Pediatric Research (2021) Volume 25, Issue 12

Assessment of depression levels, quality of life and care burden of parents with disabled children

Gulay Manav1, Busra Maraslı2, Pelin Uymaz3*

1Department of Pediatric Nursing, Mugla Sitki Kocman Unıversity, Muğla, Turkey

2Department of Pediatric Nursing, Uskudar University, Health Science Instituted, Istanbul, Turkey

3Department of Pediatric Nursing, Alanya Alaaddin Keykubat University, Alanya, Turkey

Corresponding Author:
Pelin Uymaz
Alanya Alaaddin Keykubat University
Alanya, Turkey
Tel: 905357967195
E-mail: [email protected]

Accepted date: 21st December, 2021

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Abstract

Aim: This study was conducted to evaluate depression levels, quality of life and care burden of parents with disabled children. Method: This descriptive study was conducted with 198 parents in special education and rehabilitation centers of two provinces of Turkey. The data were collected using a parental identification form, the Beck Depression Inventory, the WHOQOL-BREF quality of life questionnaire, and the Zarit caregiver burden scale. Appropriate statistical analyses were done to evaluate the data. Findings: Parents with disabled children had a mild depression and their mean scale score was 15.19 ± 9.35. Their scores were; 53.54 ± 19.39 from the general health status, 50.58 ± 12.49 from the physical health, 61.30 ± 16.99 from the psychological, 54.80 ± 22.31 from the social relations, and 58.03 ± 16.64 from the environment subscales of the quality of life scale. Their mean score from the Zarit scale was 46.30 ± 14.34. A negative correlation was found between the parents’ scores from the beck depression inventory and the quality of life scale, and a positive and statistically significant difference was found between the beck depression inventory and Zarit scale. Results: Nurses, by using a family-centered approach, should develop care protocols, guidelines and institutional policies to support parental health in the care of disabled children and put these into practice.

Keywords

Family-centered care, Parental care, Disabled child, Nursing.

Introduction

It is crisis for all family members when a disabled child is born. Having a disabled child may affect the quality of life, roles, economy, physical and mental health, marriage and social support of the family members [1]. The World health organization made research on global burden of disease in 2014 reporting the number of moderately or severely disabled individuals to be 93 million (5.1%), of whom 13 million (0.7%) are severely disabled. According to the Turkish Statistical Institute (TUIK), the proportion of the population with at least one disability was 1.2% in the 0-4 age group, 2.1% in the 5-9 age group, 2.1% in the 10-14 age group, and 2.3% in the 15-19 age group.

Parents learn about disability of the child either at birth or at any period of life as the child grows older. As a result, the parents show similar psychological adaptation responses in every type of loss [2]. It is seen that parents focus on stage theory with regard to adapting to their disabled child [3]. In such cases, parents show such reactions as shock, denial, grief, anger, guilt, anxiety, unexpected crises, avoidance of confronting with others’ attitudes, disappointment, decreased self-confidence and self-esteem [2].

There are several studies in the literature conducted with mothers and fathers with disabled children. The studies have discussed subjects such as parents’ self-perception, depression levels, self-acceptance levels, way of coping with stress, perceived social support and domestic adjustment, family burden of parents with disabled children, need for home care, unmet care needs, and difficulties experienced by parents [4]. A study conducted to determine depression levels of mothers with disabled children identified that most of those mothers had depression at moderate and severe levels [5]. Kurt et al. explained the needs of families with disabled children by use of such factors as the need for information, the need for support, the need for social services, the need that children can explain their condition to others, financial needs, and the functioning of the family [6]. Coşkun reported that severity of care burden of physically disabled children was at moderate level [7]. Another study stated that family burden of mentally disabled children was at high levels [8]. It is obvious from the literature that the interactions of mothers and fathers who have disabled children with each other, their families, their circle, life and society have taken on a new dimension, and based on the type and degree of disability, they are negatively affected physiologically, sociologically, emotionally and intellectually. This causes their course of life and care burden to be also negatively affected, which poses risk to the disabled children [9].

Both the disabled children and their parents need for nursing care in every part of life. This mentioned care can be described as physical and emotional support to parents by health care professionals and can be applied to all health institutions for all patients at any age [10]. Nurses, who have an active role in the care of disabled children, believe that the number of studies in this area is not adequate. Families with disabled children need additional family support and experts because there is need for child’s care, treatment, education, and to acquire various social skills, and such care requires special knowledge [11]. The health of disabled children affects parents’ health and vice versa. For this reason, it is important to consider the depression, quality of life and family care burden that affect the parents’ health as they provide care to disabled children, and to plan family-centered nursing care in consideration of family care, which has a great importance in children’s life to develop, protect and improve the their health. This study can contribute to nursing care practices in disabled children within the scope of family centered nursing approach.

This descriptive study was conducted to evaluate depression levels, quality of life and care burden of parents with disabled children.

Hypotheses of the study are as follows:

•What are depression levels of parents with disabled children?

•How is the quality of life of parents with disabled children?

•How is the family burden of parents with disabled children?

Is there any interaction among depression levels, quality of life and family care burden of parents?

Materials and Methods

The research was done with the parents of the children who received treatment and education between June 25 and August 25, 2018 in special education and rehabilitation centers in two provinces that provide individual therapy, group therapy, space therapy, physiotherapy, speech therapy, hydrotherapy, hearing therapy, sensory therapy, dark room sensory therapy, family counseling and PECS system.

The study, using purposeful sampling, was carried out with 198 parents who agreed to participate and signed the informed consent form.

To collect the data, a parental identification form, the Beck Depression Inventory (BDI), the WHOQOL-BREF quality of life questionnaire, and the Zarit caregiver burden scale were used. The parent identification form, developed by the researcher, consists of 14 questions and examines socio-demographic attributes of parents. The BDI was developed by Beck et al. in 1961 [12] and was adapted to Turkish by Hisli in 1989, with Cronbach’s alpha of 0.80 obtained in the item analysis. The cut-off point was determined as 17 in the Turkish validity and reliability of the BDI. The obtainable total score from the scale ranged from 0 to 63 [13]. The parents’ scores from the BDI ranged between 0 and 39, the mean was 15.19 ± 9.35 and internal consistency of the scale was α=0.885.

The WHOQOL BREF TR (World Health Organization Quality of Life Short Form) was used to determine patients’ quality of life. The WHOQOL BREF TR consists of global and national 27 questions. This form adverts general health status and quality of life and physical, social, psychological and environmental well-being of individuals [14]. The questions include Likert type closed-ended responses. The scale was translated into Turkish by Eser et al. and its validity and reliability was proved [15]. Internal coefficients of the scale were found to be very high. The highest internal consistency was 0.83 in physical area and the lowest was 0.53 in social area. The WHOQOL-Bref is scored over 20 points. A higher score from the scale shows higher quality of life [16].

The BDI scale was developed by Zarit et al. in 1980 and it was adapted to Turkish by İnci in 2006 [17,18]. This scale is used to evaluate the problems experienced by caregivers. A higher score from the scale indicates greater distress [19].

For the statistical analyses, Number Cruncher Statistical System) (NCSS) 2007 software (Kaysville, Utah, USA) was used. Descriptive statistical methods were used for evaluating the data. Correspondence of quantitative data to normal distribution was tested using the Shapiro-Wilk test. The student t-test was used in the comparisons of quantitative variables that showed normal distribution between two groups, and the Mann-Whitney U-test was used for quantitative variables that did not show normal distribution. One-way ANOVA and binary assessments with Bonferroni correction were used in comparisons of quantitative variables that showed normal distribution among more than two groups. In the comparisons of quantitative variables that did not show normal distribution, however, the Kruskal-Wallis test and Dunn-Bonferroni test were used. The Pearson correlation and spearman correlation analyses were used to evaluate correlations between quantitative variables. The risk factors that affected the BDI score were calculated using the linear regression analysis (backward). The statistical significance level was taken as p<0.05.

Research Ethics

A written permission with number B.08.6.YÖK.2.ÜS.0.05.0.06/2018/598 was obtained from the Uskudar university institute of health sciences ethics committee on 25.04.2018 to conduct the study. The study included informed consent forms to ensure voluntary participation and took into consideration the principles of autonomy, confidentiality and protection of confidentiality, receiving adequate and correct care, not doing harm, and utility. The Helsinki declaration of human rights was adhered throughout the research.

Findings

The study was conducted with 198 children between June 25 and August 25, 2018. Table 1 shows some characteristics of children and their parents.

Attributes Number (n) Percent (%)
Child’s age    
0-3 years 30 15.2
4-6 years 51 25.8
7-12 years 85 42.9
13-18 years 32 16.2
Birth order of child    
First 57 28.8
Second 82 41.4
Third 35 17.7
Fourth or later 24 12.1
Having another child    
Yes, disabled 3 1.5
Yes, non-disabled 168 84.8
No other child 27 13.6
Child’s having a health problem besides disability    
Yes 48 24.2
No 150 75.8
Diagnosis    
Mentally disabled 137 69.2
Orthopedically handicapped 33 16.7
Mentally and orthopedically handicapped 8 4
Mentally disabled and with chronic disease 3 1.5
Learning disorder 9 4.5
Physically handicapped 1 0.5
Hearing and speech handicapped 5 2.5
Speech and mentally disabled 1 0.5
Growth retardation 1 0.5
Parent responsible for the child’s care    
Single parent 41 20.7
Parents together 157 79.3
Age of parents    
18-25 years 9 4.5
25-35 years 64 32.3
35-45 years 87 43.9
45 years 38 19.2
Parental education level    
Literate 5 2.5
Primary school 50 25.3
Secondary school 31 15.7
High school 79 39.9
University 30 15.2
Other 3 1.5
Social security    
Yes 166 83.8
No 32 16.2
Occupation    
Workmen 43 21.7
Office worker 31 15.7
Self-employed 15 7.6
Freelancer 8 4
Not working 94 47.5
Other 7 3.5
Income status    
Less income than expense 49 24.7
Equal income to expense 134 67.7
More income than expense 15 7.6
Chronic health problem    
Yes 35 17.7
No 163 82.3
Family Structure    
Nuclear family 166 83.8
Extended family 26 13.1
Other 6 3
Child’s feelings about the disability    
Shock, denial, grief 18 9.1
Guilt, indecision, anger, embarrassment 27 13.6
Reconciliation, acceptance, adaptation 153 77.3

Table 1. Distribution of some characteristics of children and their parents (n=198).

Of the children who participated in the study, 85 were between the ages of 7 years and 12, 41.4% of whom were the second child of the family. Three of other children in the families were disabled, while 168 were non-disabled. Of the disabled children, 69.2% were mentally disabled. Of them, 157 lived together with their parents; 87 of the parents aged between 35 and 45 years and 39.9% were high school graduates. While 47.5% of the parents were unemployed, 24.7% had lower income than expense. Of the children, 77.3% stated they were at the phase of reconciliation, acceptance and adaptation of their disability. Table 2 shows the correlation between the total scale score and the scores of its subscales.

The scales BDI total scale score
r p
WHOQOL General health status -0.416a 0.001**
Physical health -0.388a 0.001**
Psychological dimension -0.677a 0.001**
Social relations -0.588a 0.001**
Environment -0.343a 0.001**
Zarit Caregiver Burden Scale Mental tension and disruption of private life 0.646b 0.001**
Irritability, restriction 0.579b 0.001**
Disruption of social relations 0.524b 0.001**
Economic burden 0.433a 0.001**
Dependency 0.397b 0.001**
Zarit Total Score 0.638a 0.001**

Table 2. The correlation between the total scale score and the scores of its subscales. ar: Pearson correlation coefficient, br: Spearman correlation coefficient, **: p<0.01.

There was a negative and statistically significant difference between the parents’ scores from the BDI and the subscales of the WHOQOL (p<0.01). There was a positive and statistically significant difference between their scores from the BDI and the subscales of Zarit scale (p<0.01). As their depression level increases, their quality of life decreases and burden level increases. There was no negative correlation between the parents’ scores from the subscales of WHOQOL and Zarit scale (p<0.05). This means as caregiver burden increases, the quality of life of the individual in question decreases. The univariate analysis of the subscales of WHOQOL and Zarit scale indicates that these are each a risk factor for the total BDI score. To show their multivariate effects, a linear regression (backward) analysis was made.

The summary of the model showing the degree of influence of the scores from the subscales of WHOQOL and Zarit scales at the end of five steps is given in Table 3. Therefore, (R2=0.589) scores from the subscales of WHOQOL and Zarit scales affect the level of depression at a rate of 58.9%. The effect of the subscales of WHOQOL and Zarit scales on the level of depression was tested using regression analysis and at the end of the five steps, a significant correlation was found between the mentioned variables (R2=0.589). The regression analysis showed that the general health status, mental tension and disruption of private life, disruption of social relations and attachment subscales had no significant effect on the model (p>0.05).

Model R R square Corrected R square  Standard error
5 0.768 0.589 0.576 6.087

Table 3. Summary of the model.

Parents’ total scores from the BDI and the affecting features are given in Table 4. The parents’ scores from the BDI ranged between 0 and 39 and their depression level was found to be mild with a score of 15.19 ± 9.35. There were significant correlations between the parents’ social security and child’s feelings about the disability and the BDI (p<0.05, p<0.01).

Attributes n BDI scores Test value (p)
Mean ± SD
Child’s age      
0-3 years 30 11.4 ± 8.06  
4-6 years 51 15.04 ± 9.26 F:2.240
7-12 years 85 16.47 ± 9.2 e0.085
13-18 years 32 15.59 ± 10.43  
Birth order      
1st child 57 14.46 ± 9.46  
2nd child 82 15.29 ± 9.44 F:0.396
3rd child 35 14.97 ± 9.98 e0.756
4th child 24 16.92 ± 8.1  
Having another child      
Yes 171 15.51 ± 9.43 t:1.224
No 27 13.15 ± 8.71 c0.223
Having other health problems      
Yes 48 16.02 ± 9.84 t:0.705
No 150 14.93 ± 9.21 c0.482
Age of parents      
18-25 years 9 15.22 ± 8.32  
25-35 years 64 14.06 ± 9.18 χ2:1.328
35-45 years 87 15.52 ± 9.48 f0.723
>45 years 32 16.34 ± 9.73  
Parental education level      
Low 89 15.96 ± 8.95  
Moderate 79 15.47 ± 9.76 F:1.883
High 30 12.2 ± 9.11 e0.115
Social security      
Yes 166 14.69 ± 9.67 t:-2.154
No 32 17.81 ± 7.03 c0.036
Income status      
Low 49 16.61 ± 8.21  
Moderate 134 15.16 ± 9.57 F:2.249
High 15 10.8 ± 10.09 e0.108
Chronic health problem      
Yes 35 16.4 ± 11.19 t:0.728
No 163 14.93 ± 8.93 c0.471
Family Structure      
Nuclear 166 15.05 ± 9.67 χ2:2.199
Extended 26 16.81 ± 7.83 f0.333
Other 6 12.17 ± 5.04  
Child’s feelings about the disability      
Shock, denial, grief 18 22.83 ± 9.28 F:31.246
Guilt, indecision, anger, embarrassment 27 24.19 ± 8.59 e0.001**
Reconciliation, acceptance, adaptation 153 12.71 ± 7.97 1>3, 2>3

Table 4. Evaluation of the BDI scores and the affecting features. c: Student t-test, e: One-way ANOVA, f: Kruskal Wallis test, *: p<0.05, **: p<0.01.

Evaluation of the WHOQOL subscales and total scores and the affecting features is provided in Table 5. Parents with children aged 0-3 years had higher scores from the psychological dimension and social relations subscales of WHOQOL compared to those with children aged 4-6 years and 7-12 years. Parents who had lower education level had higher scores from the environment subscale of the WHOQOL compared to those with higher education level. Regarding the child’s feelings about the disability, children obtained higher scores from the physical health and social relations subscales compared to guilt, shock and reconciliation and higher scores from the psychological dimension compared to guilt and reconciliation.

Subscales/Attributes   General health status Physical health Psychological dimension Social relations Environment
 n Mean ± SD Test value (p) Mean ± SD Test value (p) Mean ± SD Test value (p) Mean ± SD Test value (p) Mean ± SD Test value (p)
Child’s age                      
0-3 years 30 60 ± 15.19 F:1.745 53.45 ± 12.35 F:1.116 69.72 ± 18.18 F:3.168 67.5 ± 20.1 F:4.819 60.73 ± 16.28 F:0.478
4-6 years 51 53.92 ± 22.01 e0.159 50.28 ± 13.59 e0.344 59.23 ± 16.04 e0.026* 49.84 ± 22.64 e0.003** 58.21 ± 18.48 e0.698
7-12 years 85 50.74 ± 20.26   49.12 ± 12.06   59.41 ± 16.59 1>2, 1>3 52.35 ± 22.11 1>2,1>3 56.69 ± 17.02  
13-18 years 32 54.3 ± 14.76   52.23 ± 11.82   61.72 ± 16.68   57.29 ± 20.38   58.79 ± 12.76  
Birth order                      
1st child 57 53.07 ± 21.56 F:0.362 51.88 ± 13.36 F:0.493 62.5 ± 18.13 F:0.357 53.95 ± 24.4 F:0.212 58.88 ± 18.65 F:0.404
2nd child 82 55.03 ± 16.77 e0.781 50.74 ± 11.67 e0.688 61.59 ± 16.52 e0.784 55.39 ± 21.33 e0.888 58.88 ± 14.37 e0.750
3rd child 35 51.07 ± 18.03   49.29 ± 12.4   60.71 ± 17.01   53.1 ± 21.01   56.25 ± 16.18  
4th child 24 53.13 ± 24.52   48.81 ± 13.56   58.33 ± 16.39   57.29 ± 23.35   55.73 ± 19.86  
Having another child                      
Yes 171 53.87 ± 19.33 t:0.618 50.23 ± 12.65 t:-0.985 60.82 ± 17.07 t:-1.004 54.48 ± 22.71 t:-0.498 58.04 ± 16.47 t:0.016
No 27 51.39 ± 20.02 c0.537 52.78 ± 11.35 c0.326 64.35 ± 16.44 c0.316 56.79 ± 19.89 c0.619 57.99 ± 17.98 c0.987
Having other health problems                      
Yes 48 50.26 ± 19.03 t:-1.347 47.54 ± 12.35 t:-1.947 55.38 ± 16.01 t:-2.822 51.74 ± 22.93 t:-1.093 53.26 ± 13.83 t:-2.311
No 150 54.58 ± 19.45 c0.180 51.55 ± 12.42 c0.053 63.19 ± 16.91 c0.005** 55.78 ± 22.1 c0.276 59.56 ± 17.21 c0.022*
Age of parents                      
18-25 years 9 51.39 ± 22.92   51.59 ± 17.42   62.04 ± 22.29   61.11 ± 24.3   50 ± 21.42  
25-35 years 64 55.08 ± 19.38 χ2:1.505 51.56 ± 12.48 χ2:1.418 62.96 ± 17.43 χ2:0.439 57.29 ± 23.45 χ2:2.529 59.13 ± 17.63 χ2:3.086
35-45 years 87 53.3 ± 19.3 f0.681 50.45 ± 11.54 f0.701 60.34 ± 16.38 f0.932 53.83 ± 21.18 f0.470 57.69 ± 15.42 f0.379
>45 years 32 51.97 ± 19.39   48.97 ± 13.62   60.53 ± 16.74   51.32 ± 22.56   58.88 ± 16.56  
Parental education level                      
Low 89 52.53 ± 20.31 F:0.430 51.36 ± 14.34 F:0.413 60.07 ± 17.56 F:0.440 55.34 ± 23.28 F:0.064 54.39 ± 17.15 F:4.258
Moderate 79 53.32 ± 16.23 e0.652 49.64 ± 10.59 e0.663 62.13 ± 16.52 e0.644 54.11 ± 22.04 e0.938 60.32 ± 14.63 e0.015*
High 30 57.08 ± 24.05   50.71 ± 11.39   62.78 ± 16.77   55 ± 20.72   62.81 ± 18.25 1>3
Social security                      
Yes 166 55.2 ± 18.32 t:2.791 50.69 ± 12.63 t:0.285 62.3 ± 17.29 t:1.896 55.32 ± 22.74 t:0.751 60.05 ± 15.95 t:4.038
No 32 44.92 ± 22.64 c0.006** 50 ± 11.9 c0.776 56.12 ± 14.51 c0.059 52.08 ± 20.08 c0.454 47.56 ± 16.45 c0.001**
Income status                      
Low 49 44.64 ± 20.09 F:24.871 47.38 ± 12.54 F:10.362 52.38 ± 13.04 F:14.172 46.94 ± 21.83 F:7.397 44.52 ± 13.33 F:46.63
Moderate 134 53.73 ± 16.72 e0.001** 50.32 ± 11.88 e0.001** 63 ± 17.09 e0.001** 55.91 ± 21.6 e0.001** 60.4 ± 14.21 e0.001*
High 15 80.83 ± 13.25 1>2, 1>3, 2>3 63.33 ± 10.23 1>3 75.28 ± 13.68 1>2, 1>3, 70.56 ± 21.1 1>2, 1>3 81.04 ± 10.4 1>2,1>3
          2>3   2>3   2>3   2>3
Chronic health problem                      
Yes 35 50.36 ± 23.77 t:-1.069 53.67 ± 14.94 t:1.398 59.05 ± 18.09 t:-0.864 51.43 ± 23.7 t:-0.985 55.54 ± 17.65 t:-0.979
No 163 54.22 ± 18.33 c0.286 49.91 ± 11.84 c0.169 61.78 ± 16.76 c0.389 55.52 ± 22.01 c0.326 58.57 ± 16.42 c0.329
Family Structure                      
Nuclear 166 54.07 ± 18.42 χ2:2.413 50.67 ± 12.45 χ2:0.039 61.55 ± 17.3 χ2:0.669 54.47 ± 22.54 χ2:0.056 59.24 ± 16.2 χ2:6.609
Extended 26 50 ± 22.36 f0.299 50.14 ± 13.76 f0.981 60.74 ± 14.77 f0.716 56.09 ± 20.89 f0.972 52.64 ± 18.28 f0.037*
Other 6 54.17 ± 32.27   50 ± 9.04   56.94 ± 19.31   58.33 ± 25.28   47.92 ± 15.89 1>2
Child’s feelings about the disability                      
Shock, denial, grief 18 55.56 ± 18.3   56.75 ± 13.63   56.48 ± 14.24   56.48 ± 22.24   63.72 ± 13.18  
Guilt, indecision, anger, embarrassment 27 47.22 ± 14.84 F:2.551 43.65 ± 10.26 F:6.854 51.23 ± 11.43 F:11.597 39.81 ± 17.65 F:7.525 53.13 ± 14.16 F:2.264
      e0.092   e0.001**   e0.001**   e0.001**   e0.107
Reconciliation, acceptance, adaptation 153 54.41 ± 20.1   51.07 ± 12.25 2>1, 2>3 63.64 ± 17.4 2>3 57.24 ± 22.14 2>1, 2>3 58.23 ± 17.23  

Table 5. Evaluation of the WHOQOL subscales and total scores and the affecting features. f: Kruskal Wallis Test, c: Student t-test, d: Mann Whitney U test, e: One-way ANOVA, *: p<0.05, **: p<0.01.

The scores from the Zarit scale and its subscales and the affecting features are given in Table 6. Statistically significant outcomes were obtained between Zarit scale and child’s age and all subscales, between birth order and economic burden, between having another child and economic and total scale score, between having another health problem and dependency and total scale score, between irritability and restriction subscales and all other subscales regarding child’s feelings about the disability. There was a significant correlation between child’s age and all subscales. This shows that parents take on care burden irrespective of the disabled child’s age. Economic burden of the first child is more than that of the fourth child. Mental tension and disruption of private life, and irritability and restriction are more common in families with low income compared to families with higher income.

Subscales / Attributes Mental tension and disruption of private life Irritability, restriction Disruption of social relations Economic burden Dependency Zarit Scale Total Score
Mean ± SD Test value (p) Mean ± SD Test value (p) Mean ± SD Test value (p) Mean ± SD Test value (p) Mean ± SD Test value (p) Mean ± SD Test value (p)
Child’s age                        
0-3 years 12.3 ± 5.04 χ2:8.610 5.2 ± 2.28 χ2:11.943 3.83 ± 1.26 χ2:12.553 11.67 ± 4.2 F:2.679 5.23 ± 2.71 χ2:15.049 38.23 ± 11.89 F:4.206
4-6 years 15.63 ± 5.96 f0.035* 6.96 ± 3.03 f0.008** 5.2 ± 2.09 f0.006** 12.9 ± 3.75 e0.048* 5.57 ± 2.51 f0.002** 46.25 ± 14.81 e0.007**
7-12 years 15.36 ± 5.76 1>3 7.19 ± 2.67 1>2, 1>3 5.18 ± 2.01 1>2, 13.73 ± 3.48 1>3 6.76 ± 2.64 1>3, 1>4, 2>4 48.22 ± 13.57 1>3, 1>4
13-18 years 16.16 ± 6.99   6.78 ± 3.03   4.97 ± 2.65 1>3 13.69 ± 3.32   7.25 ± 2.44   48.84 ± 15.56  
Birth order                        
1st child 14.09 ± 5.9 χ2:5.216 6.56 ± 2.47 χ2:0.678 4.81 ± 2.12 χ2:2.084 12.35 ± 3.24 F:3.109 6.14 ± 2.86 χ2:0.455 43.95 ± 12.83 F:1.500
2nd child 14.95 ± 5.58 f0.157 6.79 ± 2.87 f0.878 4.79 ± 1.9 f0.555 13.09 ± 3.55 e0.028* 6.45 ± 2.6 f0.929 46.07 ± 14.14 e0.216
3rd child 15.43 ± 6.58   7.11 ± 3.3   5 ± 2.06   13.63 ± 4.13 1>4 6.2 ± 2.69   47.37 ± 15.63  
≥4th child 17.5 ± 6.46   6.63 ± 2.95   5.71 ± 2.65   14.96 ± 3.98   6.33 ± 2.57   51.13 ± 15.97  
Having another child                        
Yes 15.43 ± 6.2 Z:-1.771 6.82 ± 2.93 Z:-0.568 5.02 ± 2.15 Z:-0.791 d0.429 13.37 ± 3.78 t:2.045 6.37 ± 2.65 Z:-0.908 47.02 ± 14.89 t:2.498
No 12.96 ± 4.04 d0.077 6.37 ± 2.17 d0.570 4.48 ± 1.65   12.11 ± 2.82 c0.047* 5.85 ± 2.84 d0.364 41.78 ± 9.15 c0.016*
Having other health problems                        
Yes 16.77 ± 6.77 Z:-2.109 7.71 ± 2.97 Z:-2.612 5.5 ± 2.18 Z:-2.290 14.25 ± 3.43 t:2.298 6.63 ± 2.78 Z:-0.984 50.85 ± 14.83 t:2.562
No 14.56 ± 5.66 d0.035* 6.46 ± 2.74 d0.009** 4.77 ± 2.04 d0.022* 12.86 ± 3.71 c0.023* 6.2 ± 2.64 d0.325 44.85 ± 13.92 c0.011*
Age of parents                        
18-25 years 13.67 ± 5.72 χ2:2.737 6.33 ± 2.69 χ2:1.634 4.89 ± 2.03 χ2:2.506 12.22 ± 4.02 χ2:2.400 5.56 ± 2.92 χ2:2.748 42.67 ± 14.64 χ2:2.707
25-35 years 14.39 ± 6.14 f0.434 6.45 ± 2.58 f0.652 4.69 ± 2.11 f0.474 12.72 ± 3.34 f0.494 5.94 ± 2.79 f0.432 44.19 ± 13.56 f0.439
35-45 years 15.57 ± 6.02   7.07 ± 3.01   5.02 ± 2.01   13.53 ± 3.64   6.6 ± 2.53   47.79 ± 14.27  
>45 years 15.53 ± 5.86   6.68 ± 2.93   5.21 ± 2.3   13.47 ± 4.25   6.42 ± 2.74   47.32 ± 15.65  
Parental education level                        
Low 15.45 ± 6.12 χ2:2.188 6.9 ± 2.81 χ2:3.971 5.25 ± 2.27 χ2:3.411 13.3 ± 3.79 F:0.834 6.08 ± 2.72 χ2:1.187 46.98 ± 14.49 F:0.978
Moderate 15.22 ± 5.98 f0.335 6.96 ± 2.93 f0.137 4.75 ± 1.9 f0.182 13.38 ± 3.36 e0.436 6.52 ± 2.61 f0.552 46.82 ± 14.28 e0.378
High 13.73 ± 5.73   5.83 ± 2.57   4.57 ± 1.96   12.4 ± 4.17   6.4 ± 2.72   42.93 ± 14.06  
Social security                        
Yes 15.11 ± 6.13 Z:-0.194 6.77 ± 2.81 Z:-0.098 4.92 ± 2.12 Z:-0.798 13.12 ± 3.7 t:-0.664 6.39 ± 2.67 Z:-1.100 46.31 ± 14.66 t:0.009
No 15.03 ± 5.43 d0.846 6.72 ± 3.02 d0.922 5.09 ± 1.99 d0.425 13.59 ± 3.64 c0.507 5.84 ± 2.65 d0.271 46.28 ± 12.76 c0.993
Income status                        
Low 16.04 ± 5.38 χ2:8.535 7.51 ± 2.62 χ2:8.360 5.39 ± 2.08 χ2:5.416 13.8 ± 3.38 F:1.255 6.18 ± 2.74 χ2:1.540 48.92 ± 11.45 F:2.883 e0.068
Moderate 15.13 ± 6.21 f0.014* 6.64 ± 2.89 f0.015* 4.86 ± 2.11 f0.067 13.09 ± 3.83 e0.287 6.25 ± 2.68 f0.463 45.98 ± 15.36  
High 11.67 ± 5.16 1>3 5.4 ± 2.53 1>3 4.27 ± 1.79   12.2 ± 3.19   7.13 ± 2.36   40.67 ± 12.04  
Chronic health problem                        
Yes 15.34 ± 6.16 Z:-0.192 6.57 ± 2.97 Z:-0.413 5.2 ± 2.17 Z:-0.919 12.37 ± 4.58 t:-1.223 6.14 ± 2.69 Z:-0.383 45.63 ± 15.91 t:-0.306
No 15.04 ± 5.99 d0.848 6.8 ± 2.82 d0.680 4.89 ± 2.08 d0.358 13.37 ± 3.46 c0.228 6.34 ± 2.67 d0.702 46.45 ± 14.03 c0.760
Family Structure                        
Nuclear 15.02 ± 5.95 χ2:0.584 6.78 ± 2.93 χ2:0.147 4.9 ± 2.06 χ2:1.451 13.17 ± 3.64 χ2:0.699 6.28 ± 2.7 χ2:0.968 46.16 ± 14.43 χ2:0.889
Extended 14.85 ± 5.44 f0.747 6.77 ± 2.16 f0.929 4.92 ± 2.15 f0.484 13.04 ± 4.04 f0.705 6.19 ± 2.55 f0.616 45.77 ± 13.45 f0.641
Other 18.17 ± 9.75   6.33 ± 3.33   6.17 ± 2.86   14.5 ± 3.62   7.33 ± 2.5   52.5 ± 16.66  
Child’s feelings about the disability                        
Shock, denial, grief 17.67 ± 5.35 χ2:24.134 7.39 ± 2.45 χ2:16.907 5.5 ± 2.33 χ2:15.242 14.44 ± 3.48 F:5.033 7.11 ± 2.08 χ2:6.687 52.11 ± 11.27 F:12.498
Guilt, indecision, anger, embarrassment 19.85 ± 6.3 f0.001** 8.78 ± 2.56 f0.001** 6.15 ± 1.88 f0.001** 14.85 ± 3.01 e0.007** 7.22 ± 3.03 f0.035* 56.85 ± 14.09 e0.001**
    1>3, 2>3   1>3   1>3   1>3   1>3   1>3, 2>3
Reconciliation, acceptance, adaptation 13.95 ± 5.54   6.33 ± 2.77   4.67 ± 2.03   12.76 ± 3.72   6.05 ± 2.63   43.76 ± 13.71  

Table 6. Evaluation of the Zarit’s subscales and total scores and the affecting features. f: Kruskal Wallis Test, c: Student t-test, d: Mann Whitney U test, e: One-way ANOVA, *: p<0.05, **: p<0.01.

Results and Discussion

According to a study conducted with families of disabled children in 2009, those families of the disabled children in the younger age group faced problems such as school selection and guidance, whereas the families of the disabled children in the older age groups faced such problems as future life and employment status of their children. Thus, families with disabled children in the older age groups had higher depression levels [9]. This study, however, found that while age did not affect the depression level of the families, having social security affected it and that depression level of the parents who had social security was low. Sen et al. found that the majority of families with disabled children (47%) had moderate and severe depression levels [20].

The study shows that the factors that affected the quality of life of the families were child’s age and having social security. Parents with disabled children aged 3 years and under had higher scores from the psychological dimension and social relations subscales of the WHOQOL compared to those with disabled children aged 4 years and over. Thus, we can say that the parents with a child in the 0-3 age group have higher quality of life. As the children grow older, the problems that their families have to face increase too. It takes time for the families to accept the situation as the children grow older. The families may feel pressured by social structures and may be judged that they do not understand their disabled child’s needs. To avoid this, families may limit their social networks [21]. As the disabled children grow older, their families’ social relations reduce, and so, they are affected mentally.

Significant correlations were found between having social security and income status and the subscales of the WHOQOL. Aktürk et al. [22]. found a negative correlation between economic status and anxiety levels of families. Thomas et al. found that parents with higher monthly income had higher quality of life even when they had a disabled child [23]. Şimşek et al. stated that families with disabled children had economic problems, they did not find time to get involved with their healthy children, thus their social and interpersonal relationships were greatly affected [24]. In addition, when they had to leave their jobs to take care of their disabled child, they faced economic problems with the loss of either mother’s or father’s income [20].

There were significant outcomes between all subscales of Zarit scale and child’s age in this study. Roberts et al. discussed that a disabled child would need extra care in all areas of life and in this case, their families would take on more care burden [25]. Mothers of disabled children have the greatest care burden and experience higher depression and anxiety compared to other mothers with healthy children [26,27]. Sen et al. stated that care and treatment of disabled children cause financial difficulties to their families [20]. Economic burden brought by every disabled child is considerably high and his/her care, treatment and education bring a greater economic burden to the family.

Consequently, in line with the literature, depression levels, quality of life and care burden of families with disabled children are affected by the child’s age and the presence of social security. Taking into account parents’ scores from BDI, their depression levels were found to be mild. Also, there were significant correlations between having social security and child’s feelings about the disability and the BDI. Parents who had a disabled child in the 0-3 age group and had lower education level had higher quality of life scores than others. A significant correlation was found between having another child, income status, and child’s age and the subscales of Zarit scale.

There was a positive and statistically significant difference between parents’ scores from the BDI and the total scores from Zarit scale (p<0.01). There was a negative and statistically significant difference between their scores from the subscale of WHOQOL and the total scores from Zarit scale (p<0.01). The linear regression analysis (back ward) showed that the scores from the WHOQOL subscale and subscales of Zarit scale affected depression at a rate of 58.9%. Because there is interaction between the quality of life, family care burden and depression levels of parents, the importance of family centered care of disabled children in nursing is underlined.

Conclusion

This study recommends nurses to assess these variables together since there is a positive correlation between caregiver burden and depression levels of parents with disabled children. Because there was a negative correlation between caregiver burden and quality of life of these parents, nurses should do applicable planning and help disabled children to sustain a better life and to reduce caregiver burden of their families.

Nurses should also develop care protocols, guidance and institutional policies and provide care with a family-centered approach to ensure care pf disabled children since there is interaction between the quality of life, care burden and depression levels of the parents.

References

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