Content of this journal is licensed under a Abstract
Objective:
Caregiver burden is a factor that caregivers undertake for patients with chronic diseases and individuals in need of care. Depending on the symptoms of the disease and the processes following the diagnosis, depression problems may develop in caregivers. In this study, it was aimed at determining the caregiving burden of parents who have children with chronic diseases, the condition of special needs, and the factors that affect this burden.
Materials and Methods:
This study is a descriptive cross-sectional study conducted with 206 parents of children who had been diagnosed with a chronic disease for at least 1 year. The sociodemographic data, the Patient Health Questionnaire 2 & 9, and the Burden Scale for Family Caregivers were provided to the parents.
Results:
Eighty-four of the participants had little or no caregiver burden, while 122 had moderate and severe caregiver burden. The mean caregiving burden score of mothers was higher (P = .004). Fathers’ caregiver burden scores varied depending on the level of education (P = .031). Caregiving burden score was found to differ according to income level (P < .001). The mean caregiving burden score of individuals with chronic disease in the family was higher (P < .001). It was determined that individuals with higher Patient Health Questionnaire 2 and 9 scores and those who did not receive psychological support were higher (P < .001).
Conclusion:
Parents who are providing care for children with chronic diseases should be supported and closely monitored for signs of depression.
Keywords: Caregiver burden, burden score, chronic disease, parents, depression
What is already known on this topic?
When children are diagnosed with a chronic illness, it is likely to be a stressful time for them and their families. Parents’ caregiving burden increases, and depressive symptoms may be observed.
What this study adds on this topic?
Depending on the disease and special needs, the caregiving burden may increase in families. In this process, the child and his/her family should be considered as a whole by following up and planning appropriate interventions when necessary.
Introduction
Chronic diseases in children are defined as health conditions that persist for more than 3 months or have a high probability of recurring at least 3 times in the recent year.1 The increasing rate of chronic diseases is on the agenda of pediatric sciences, and as a result, the need for caregivers gains importance day by day.2-4 The diagnosis of chronic diseases in children begins a stressful process for children and their parents. In the management of this process, not only the children themselves but also the whole family system will potentially be affected.5 When the family is considered as a system, it is seen that all members of the family mutually affect each other. It is stated that having a child with a disease or special needs in the family has many emotional, social, developmental, physical, and psychological effects on parents and children.6-8 In order to evaluate these effects in detail and to keep community and individual health at the highest level by planning appropriate interventions when necessary, children and the family should be considered as a whole.
The caregiver burden is one of the most important factors that caregivers undertake for patients with chronic diseases and individuals who are in need of care. As the caregiver burden increases, the physiological and psychological health of caregivers are adversely affected. Providing care for a child with a chronic health problem can cause depressive symptoms in parents.9 In addition, having a child diagnosed with a chronic disease is also associated with losing the healthy child that parents thought they had. Anxiety–depression problems and illness anxiety disorder may develop in caregivers depending on the symptoms of the disease and hospital processes following the diagnosis.10 Increased caregiving demands may cause chronic stress and emotional as well as physical fatigue, which can again lead to parental depression.11
We examined the caregiver burden and depression of parents who have children with chronic diseases, and the factors that affect this burden. We aimed to investigate the effects of factors such as sociodemographic characteristics as well as special education, the presence of another chronic disease in the family and in the child, and types of chronic diseases. In light of the information obtained from this research, we aimed to contribute to the literature on this subject by determining and evaluating the factors affecting this burden.
Materials and Methods
Study Population
This study is a descriptive and cross-sectional study conducted in parents of children who had been diagnosed with a chronic disease for at least 1 year and were followed up in Gazi Yaşargil Training and Research Hospital Developmental-Behavioral Pediatrics Outpatient Clinic between March and June 2023. The study was conducted in a referral hospital in the Southeastern Anatolia Region of Turkey. A total of 206 parents voluntarily accepted to participate in the study and were included. Family members providing primary care to the patient were included in the study. Parents were informed that participation was voluntary at the beginning of the interview, that the data analysis would be conducted anonymously, and that the results will be published for scientific research purposes only. Verbal and written informed consents were obtained from the parents. The inclusion criteria were that the children had a diagnosis of chronic disease for at least 1 year and were followed up in a Developmental-Behavioral Pediatrics outpatient clinic, and the parent was the primary caregiver. Families of children who had not been diagnosed with a chronic disease for at least 1 year, those who did not speak Turkish, and families who declared that they would participate voluntarily but later changed their decision were excluded from the study. Diagnoses of chronic diseases were grouped as neurological, genetic, cardiac, autism spectrum disorder (ASD), and prematurity + chronic lung disease (CLD). Diagnoses with fewer admissions, such as endocrinologic, metabolic, and nephrologic disorders, were grouped as the “others” group.
Data Collection
The data collection form, including sociodemographic characteristics prepared by the researchers in accordance with the literature, Burden Scale for Family Caregivers (BSFC), the Patient Health Questionnaire 2 (PHQ-2), and Patient Health Questionnaire 9 (PHQ-9) were provided to the parents, which were filled out under observation. Ethical approval for the study was received from the Clinical Research Ethics Committee of Gazi Yaşargil Training and Research Hospital, Health Sciences University, (approval date/number: March 3, 2023/337). Interviews with the parents were conducted by a developmental-behavioral pediatrician.
Data Collection Instruments
Patient Health Questionnaire 2
Patient Health Questionnaire-2 (PHQ-2) is a tool that includes 2 questions assessing the condition of anhedonia and depressed affect within the last 2 weeks. The questionnaire was used to evaluate parental depression. The answers consist of 4 options: never, some days, most days, and almost every day. The purpose of the scale is to screen for depression in a “first step” approach. It has been reported that a PHQ-2 score ≥3 has 83% sensitivity and 92% specificity for major depression; therefore, the PHQ-2 score that indicates risk of depression has been determined as ≥3 in our study. The PHQ-2 is an adequate tool for screening for depression according to the results of construct validity and criterion validity.12
Patient Health Questionnaire 9
Patient Health Questionnaire 9 (PHQ-9) includes 9 questions about symptoms of depression according to DSM-IV criteria. The PHQ-2 questions are the first 2 questions of PHQ-9. It has reasonable sensitivity and specificity. Questions get scored between 0 (not at all) and 3 (nearly every day). Points are summed up for every question. Points between 1 and 4 are rated as minimal, 5 and 9 mild, 10 and 14 moderate, 15 and 19 moderately severe, and 20 and 27 severe depression according to the scoring.13 The Turkish validity and reliability study of the scale was conducted by Sarı et al.14
Burden Scale for Family Caregivers
This scale provides information about the caregiver burden that caregivers undertake. It consists of 28 items, some of which are reverse-scored. Items are scored from 0 to 3 (strongly disagree to strongly agree), and 11 of the 28 items are reverse-coded. All of the items measure the subjective burden of caregivers providing home care for a person with a chronic disease. Scores range from 0 to 84 points. Higher scores refer to greater caregiver burden. A score between 42 and 55 was interpreted as a moderate caregiver burden and a high risk of psychosomatic disorder, and a score between 56 and 84 was interpreted as a severe caregiver burden and a very high risk of psychosomatic disorder.
The Cronbach’s alpha value was 0.89 for the total scale score. The Turkish version of the BSFC was proven to be a reliable and valid criterion by Ulusoy and Graessel.15 Permission for the use of the scale was obtained from the author.
Statistical Analysis
The conformity of the variables to the normal distribution was determined using the Shapiro–Wilk test. Mann–Whitney U-test was used for comparisons between 2 independent groups that did not conform to the normal distribution, and Kruskal–Wallis H test was used for comparisons between 3 or more groups. Continuous variables were expressed as median (minimum:maximum) values, and categorical variables were expressed as n (%) values. The relationship between age variables, PHQ scores, and the care burden score was given by the Spearman Correlation Coefficient. The correlation analysis is performed bidirectionally. Correlation coefficients are characterized as <0.19 no correlate, 0.20-0.39 weak correlate, 0.40-0.69 medium correlate, 0.70-0.89 high correlate, and 0.90-1.00 very high correlate. Multiple Linear Regression Analysis Enter Method was used to determine the factors affecting the total caregiver burden score. In the multiple linear regression analysis, the dependent variable was the caregiver burden score, and the independent variables were chronic disease in the family, concomitant chronic disease, PHQ scoring (PHQ-2 and PHQ-9), income level, and attendance ato special education center. For statistical analyses, Statistical Package for the Social Sciences Statistics software, version 25.0 (IBM Corp., Armonk, NY, USA) and Minitab 18.1 programs were used, and P < .05 was considered statistically significant.16
Results
The Participants’ Characteristics and Sociodemographic Variables
The mean age of the children with chronic diseases was found to be 3.65 ± 1.75, the mean age of the mothers was 32.71 ± 5.62, and the mean age of the fathers was 36.14 ± 6.26. About 75.72% (n = 156) of the children had special needs and were attending special education institutions. It was determined that 84 of the participants had little or no caregiver burden, while 122 had moderate or severe caregiver burden.
Caregiver Burden Scores
In the comparison of the caregiver burden scores, it was found that the median value of the mothers' score was higher than the father’s score (P = .003). In the evaluation of the caregiver burden scores in terms of education levels, it was determined that the caregiver burden scores of the fathers varied depending on the education level (P = .024). In the pairwise comparisons of the caregiver burden scores of the fathers in terms of education levels, it was determined that there was a significant difference only between the scores of individuals with primary school education and university graduates (P < .001). As a result, the mean caregiver burden median value was found to be higher in fathers with primary school education than in fathers who were university graduates. The caregiver burden score was found to be varying according to income levels (P < .001). It was observed that as the income level decreased, the mean caregiver burden score increased. No significant difference was found between the caregiver burden scores in terms of sex of the sick child, number of children, education level of the mother, family structure, and place of residence (P > .05) (Table 1).
Table 1.
Sociodemographic Characteristics and BSFC Score of the Participants
| Variables | n (%) | BSFC Score Median (Minimum:Maximum) |
Test Statistic | P |
|---|---|---|---|---|
| Gender Female Male |
83 (40.3) 123 (59.7) |
47 (5:71) 44 (6:70 |
−1.577 |
.115a |
| Participants Mother Father |
184 (89.3) 22 (10.7) |
45.5 (5:71) 33 (8:59) |
−2.931 |
.003 a |
| Number of children 1 2 3 ≥4 |
42 (20.4) 59 (28.6) 49 (23.8) 56 (27.2) |
42 (6:69) 45 (5:70) 46 (13:69) 48 (18:71) |
2.271 |
.518b |
| Mother Education Years Illiterate Primary School Secondary School High School College |
41 (19.9) 79 (38.4) 28 (13.6) 32 (15.5) 26 (12.6) |
47 (8:70) 49 (9:69) 42 (20:70) 45 (5:71) 38 (6:69) |
7.137 |
.129b |
| Father Education Years Illiterate Primary School Secondary School High School College |
12 (5.8) 64 (31.2) 38 (18.4) 52 (25.2) 40 (19.4) |
39.5 (19:65) 50 (9:71) 42 (6:70) 44.5 (5:69) 38 (16:70) |
11.209 |
.024 b |
| Family Income Level Less than minimum wage Minimum wage** More than minimum wage |
96 (46.6) 60 (29.1) 50 (24.3) |
54.5 (13:71) 45 (6:68) 38 (5:70) |
24.561 |
<.001 b |
| Family structure Nuclear family Extended family Broken family* |
188 (91.3) 16 (7.8) 2 (1.0) |
44 (5:71) 44 (8:56) - |
−0.936 |
.349a |
| Place of residence City Suburbs Village |
132 (64.1) 52 (25.2) 22 (10.7) |
43.5 (6:71) 45.5 (5:70) 49 (13:69) |
1.350 |
.509b |
P values in bold are statistically significant (P < .05).
BSFC, Burden Scale for Family Caregivers.
aMann–Whitney U-test.
bKruskal–Wallis H test.
*Samples were not included in the comparison because the sample size was <5.
**Minimum wage: The lowest wage level that can legally be paid to workers. In March 2023, this was 8506 TL per month.
According to the analysis results presented in Table 2, it was determined that the mean caregiver burden median value was higher in individuals with chronic diseases in the family (P < .001). The caregiver burden scores were found to differ significantly according to disease categories (P = .001). In the pairwise comparisons between the caregiver burden scores in terms of disease categories, the median caregiver burden score was found to be higher in the parents of patients with ASD and prematurity + chronic lung disease (CLD) than in the parents of cardiac patients (P = .002, P = .001 respectively). The median caregiver burden score was found to be higher in the parents of patients with ASD and prematurity + CLD than in the parents of patients with genetic diseases (P = .002, P = .001, respectively). It was observed that the presence of a concomitant chronic disease increased the median caregiver burden score (P < .001). The median caregiver burden score in the parents of individuals who were in need of and receiving special education was higher compared to the parents of children who were not in need of special education (P < .001).
Table 2.
Comparison of BSFC Score with the Characteristics of Chronic Diseases of the Participants
| Variables | n (%) | BSFC score Median (Minimum:Maximum) |
Test Statistic | P |
|---|---|---|---|---|
| Chronic disease in the family Yes No |
38 (18.4) 168 (81.6) |
56 (26:71) 42.5 (5:70) |
−3.847 |
<.001 a |
| Type of chronic diseases Neurological Genetic ASD Cardiac Prematurity + CLD Others |
72 (35.0) 50 (24.3) 30 (14.6) 18 (8.7) 16 (7.8) 20 (9.7) |
44 (8:71) 35 (13:67) 49 (5:69) 37 (6:70) 56 (9:70) 49 (21:66) |
21.094 |
.001 b |
| Presence of other chronic disease Yes No |
80 (38.8) 126 (61.2) |
51.5 (5:71) 41 (6:69) |
−3.834 |
<.001 a |
| Postdiagnosis period 1 2 3 ≥4 |
55 (26.7) 66 (32.0) 36 (17.5) 49 (23.8) |
42 (5:68) 46 (6:71) 41.5 (9:69) 45 (13:70) |
2.124 |
.547b |
| Attendance to special education Yes, regularly Yes, irregular No |
146 (70.9) 10 (4.9) 50 (24.3) |
45 (5:71) 56 (46:70) 37 (6:64) |
16.624 |
<.001 b |
| Received special education Individual Physiotherapy Individual + physiotherapy Language speech* Sensory integration* |
48 (23.3) 36 (17.5) 64 (31.1) 4 (1.9) 4 (1.9) |
47 (5:70) 46.5 (8:59) 45 (19:71) - - |
3.330 |
.189b |
| PHQ-2 scoring <3 ≥3 |
106 (51.5) 100 (48.5) |
31 (5:61) 56 (32:71) |
−8.068 |
<.001 a |
| PHQ-9 scoring Minimal Mild Moderate Moderately severe |
25 (25) 26 (26) 37 (37) 12 (12) |
42 (32:47) 49 (33:59) 61 (33:71) 68.5 (65:71) |
63.445 |
<.001 b |
| Psychological support Yes No Not needed |
6 (2.9) 106 (51.5) 94 (45.6) |
42 (40:69) 53 (13:71) 35 (5:61) |
42.351 |
<.001 b |
P values in bold are statistically significant (P < .05).
ASD, autism spectrum disorder; BSFC, Burden Scale for Family Caregivers; CLD, chronic lung disease; PHQ-2, Patient Health Questionnaire 2; PHQ-9, Patient Health Questionnaire 9.
aMann–Whitney U-test.
bKruskal–Wallis H test.
*Samples were not included in the comparison because the sample size was <5.
Patient Health Questionnaire 2 and Patient Health Questionnaire 9 Scores
The median caregiver burden score of participants with a PHQ-2 score of 3 and above was higher than the mean caregiver burden score of those with a PHQ-2 score below 3 (P < .001). It was determined that the mean caregiver burden score was higher in individuals who had a high PHQ-2 score and were not receiving any psychological support (P < .001). Patient Health Questionnaire 9 was administered to parents with a PHQ-2 score of 3 and above. Caregiver burden scores were significantly different between the groups evaluated for PHQ-9 (P < .001). Pairwise comparisons were made between PHQ-9 categories in terms of caregiver burden score. Differences in all pairwise comparisons were significant (P < 0.05).
As the PHQ-9 score increased, the median value of the caregiving burden score also increased. It was determined that the caregiver burden scores did not significantly differ according to the time since diagnosis or the type of special education the patients were receiving (P > .05).
No significant relationship was found between the caregiver burden score and the age of the patient, the age of the mother, and the age of the father (P > .05). It was observed that there was a positive-oriented intermediate level and significant relationship between the PHQ-2 scores and the caregiver burden scores of the parents who participated in the study (r = 0.611, P < .001; r = 0.520, P = .013). There was a positive, high-level, and significant relationship between the PHQ-9 scores and caregiving burden scores of the mothers participating in the study (r = 0.846, P < .001). There was no significant relationship between PHQ-9 scores and caregiving burden scores of the fathers who participated in the study (P > .05) (Table 3).
Table 3.
The Relationship Between BSFC Score and Age Variables and PHQ Scores
| Variables | n | BSFC score | |
|---|---|---|---|
| Age of child | 206 |
r
P |
0.082 .239 |
| Age of mother | 206 |
r
P |
–0.011 .881 |
| Age of father | 206 |
r
P |
0.014 .844 |
| PHQ-2 scores of mother | 184 |
r
P |
0.611*
<.001 |
| PHQ-2 scores of father | 22 |
r
P |
0.520*
.013 |
| PHQ-9 scores of mother | 90 |
r
P |
0.846*
<.001 |
| PHQ-9 scores of father | 10 |
r
P |
−0.515 .128 |
P values in bold are statistically significant (P < .05).
<0.19 no correlation, 0.20-0.39 weak correlation, 0.40-0.69 medium correlation, 0.70-0.89 high correlation, and 0.90-1.00 very high correlation (Alpar, R., 2010).
BSFC, Burden Scale for Family Caregivers; PHQ-2, Patient Health Questionnaire 2; PHQ-9, Patient Health Questionnaire 9; r, Spearman correlation coefficient.
*Significance level 0.05.
Regression Studies
The results of the multiple linear regression analysis of the variables affecting the caregiver burden score are presented in Table 4. According to the results of the analysis, having chronic diseases in the family increased the caregiver burden score by 4.06 points. The presence of another chronic disease in the child increases the caregiver burden score by 2.52 points. However, in the established regression model, it was determined that the variables of having chronic diseases in the family and chronic diseases were not significant (P > .05). A PHQ-2 score of 3 and above increased the caregiver burden score by 18.14 points (P < .05). An income at the minimum wage level indicated a decrease of 6.18 points, and an income above the minimum wage indicated a decrease of 10.65 points in the caregiver burden score. Finally, regular visits to a special education center for patients with special needs increased the caregiver burden score by 5.33 points, and irregular visits increased it by 16.65 points. Although the established regression model was statistically significant (F = 26.45, P < .001), the independent variables in the model explained 46.5% of the caregiver burden score.
Table 4.
Multiple Linear Regression Analysis to Determine the Factors Affecting the BSFC Score
| β | Standard Error | t | P | 95% Confidence Interval | ||
|---|---|---|---|---|---|---|
| Low | High | |||||
| Chronic Disease in the Family | 4.06 | 2.46 | 1.65 | .100 | –0.79 | 8.91 |
| Presence of other chronic disease | 2.52 | 1.98 | 1.28 | .203 | –1.37 | 6.42 |
| PHQ-2 scoring | 18.14 | 1.86 | 9.73 | <.001 | 14.46 | 21.82 |
| Family income (Ref: <MW*) MW >MW |
–6.18 –10.65 |
2.19 2.34 |
–2.83 –4.56 |
.005 <.001 |
–10.48 –15.26 |
–1.87 –6.04 |
| Attendance to special education (Ref: No) Yes, regularly Yes, irregular |
5.33 16.65 |
2.18 4.64 |
2.44 3.59 |
.016 <.001 |
1.02 7.50 |
9.64 25.79 |
| Sabit | 32.22 | 2.23 | 14.42 | <.001 | 27.81 | 36.62 |
| Model R 2 = 0.465 | ||||||
| Model Significance = <0.001; F = 26.45 | ||||||
P values in bold are statistically significant (P < .05).
Enter method was used in regression analysis.
BSFC, Burden Scale for Family Caregivers; PHQ-2, Patient Health Questionnaire 2; PHQ-9, Patient Health Questionnaire 9; Ref, reference.
*MW, minimum wage.
According to the regression analysis results based on the PHQ-9 categories given in Table 5, the presence of chronic illness in the family increases the caregiving burden score by 2.38 points. The presence of another chronic disease in the child decreases the caregiver burden score by 1.86 points. However, it was determined that the variables of chronic illness in the family and concomitant chronic illness were not significant in the regression model (P > .05). The income level of minimum wage shows a decrease of 2.18 points in the caregiver burden score, and the income level above the minimum wage shows a decrease of 4.50 points. However, only the effect of income level above the minimum wage on the caregiver burden score was significant in the model (P = .042). Regular attendance to a special education center for children with special needs decreases the caregiver burden score by 0.42 points, while irregular attendance increases it by 1.10 points, and the effects are not statistically significant in the model (P > .05). When the minimal grade in PHQ-9 scoring categories is taken as a reference, it is seen that as the grade increases, the caregiver burden score increases (P < .05). Compared to those with a minimal PHQ-9 score, those with a mild PHQ-9 score increased by 8.07 points, those with a moderate PHQ-9 score increased by 18.26 points, and those with a moderate PHQ-9 score increased by 26.86 points. The regression model was statistically significant (F = 20.74, P < .001) and the independent variables in the model explained 64.2% of the caregiving burden score.
Table 5.
Multiple Linear Regression Analysis to Determine the Factors Affecting the BSFC Score (PHQ-9 scores)
| β | Standard Error | t | P | 95% Confidence Interval | ||
|---|---|---|---|---|---|---|
| Low | High | |||||
| Chronic disease in the family | 2.38 | 1.77 | 1.34 | .183 | –1.15 | 5.91 |
| Presence of other chronic disease | –1.86 | 1.66 | –1.12 | .267 | –5.17 | 1.45 |
| Family income (Ref: <MW*) MW >MW |
–2.18 –4.50 |
1.69 2.18 |
–1.19 –2.06 |
.202 .042 |
–5.54 –8.84 |
1.18 –0.16 |
| Attendance to special education (Ref: No) Yes, regularly Yes, irregular |
–0.42 1.10 |
3.93 1.97 |
–0.11 0.56 |
.915 .579 |
–8.22 –2.82 |
7.38 5.01 |
| PHQ-9 scoring (Ref: Minimal) Mild Moderate Moderately Severe |
8.07 18.26 26.86 |
2.20 2.16 2.80 |
3.67 8.47 9.59 |
<.001 <.001 <.001 |
3.70 13.98 21.30 |
12.44 22.54 32.43 |
| Sabit | 41.40 | 4.82 | 8.58 | <.001 | 31.81 | 50.98 |
| Model R 2 = 0.642 | ||||||
| Model Significance = <0.001; F = 20.74 | ||||||
P values in bold are statistically significant (P < .05).
Enter method was used in regression analysis.
BSFC, Burden Scale for Family Caregivers; PHQ-9, Patient Health Questionnaire 9; Ref, reference.
∗MW, Minimum wage.
Discussion
In the studies carried out by Pinquart and Sörensen,17 in which the mental health, physical health, and depressive symptom levels of caregivers were examined, caregivers were found to be more prone to depression and more drained both mentally and physically. In our study, it was determined that more than half of the participants had moderate and severe caregiving burdens, and almost half of them were prone to depression. In the study of Song et al,18 it was found that providing care for children with special needs caused stress for mothers in the long term. In our study, it was observed that the caregiving burden in mothers was higher than in fathers. In families who have a child with a chronic disease, it is known that mothers undertake the daily care and responsibility of the child more. Studies show that mothers take on the responsibility of providing care when the child has a chronic disease and in cases involving general family health.19 It is observed that stress, despair, depression, and anxiety levels are higher and the quality of life is adversely affected in mothers because they are the primary caregivers.20-21
In a study, it is reported that the younger the child for whom care is provided, the greater the protectiveness of the parents, and this increases the level of stress.22 In addition, if the parents, who are obliged to provide care for the child with a lifelong health problem, cannot improve their problem-solving skills over time and cannot accept to live with this condition, they may experience mental health issues such as despair, depression, etc. The increase in the caregiving burden of the family over the years also affects this situation negatively. However, in our study, no relationship was found between the age of the child and the time since diagnosis, and the caregiving burden. Protectiveness may be state that is independent of the child’s age; and a longer time to diagnosis may facilitate the family's acceptance of the disease and the diagnosis process, compliance with the treatment and management of the disease, and ensure that this process is handled in a positive manner.
In addition, the ability to comment, express oneself, produce solutions to problems, and communicate may vary depending on the level of education of individuals.23 Having higher education levels enables parents to be more conscious about their child’s condition and to obtain information about the disease. It is thought that overcoming obscurity and concentrating on solutions rather than problems will reduce feelings of despair.24 In our study, it was determined that the caregiver burden score varied according to the education levels of the fathers only.
Parents with children who require special education have a greater caregiver burden than others. Individuals with special needs constitute an important group in the health system due to their quality of life and challenging conditions. Parents who have children with special needs face a number of problems regarding their financial situation, educational status, lifestyle, social relations, and psychological state.20 In the study conducted by Sarıçam et al,25 the caregiving burden in parents who had children with special needs and parents who did not have children with special needs was compared, and the level of caregiving burden in parents who had children with special needs was found to be statistically significantly higher. It is stated that having a child with a long-term condition and special needs in the family has many emotional, social, developmental, physical, and psychological effects on parents.6 Our study presents similar results. Children with special needs require support services that will enable their full participation in society by overcoming social and environmental barriers.26 In our study, it was found that irregular attendance of children with special needs at special education centers increased the caregiving burden significantly.
Parents who have children with special needs are also dealing with significant economic difficulties in addition to the challenges they face in providing care for their children; it has been determined that they have complaints of anxiety and depression along with the financial distress they experience.27 In the study of Öner and Aydın,28 it was observed that in caregiving parents, having an income that was less than or equal to their expenses increased the caregiving burden and depression scores. In our study, it was found that parents with an income above the minimum wage had less caregiving burden. In the study of Yach et al,19 it was reported that the presence of a concomitant disease in children with chronic diseases doubled the caregiver burden for the parents. A concomitant disease increases the caregiving burden for the parents due to higher expenses and the increased number of admissions to the hospital.29-30 Similar results were obtained in our study.
In a meta-analysis conducted by DeJean et al,31 consisting of studies published from 2002 to 2012, it has been stated that depression is a common complication of chronic diseases and may worsen the disease and affect the self-management of the disease. In the review published by Sezgin and Bektaş,27 it was found that depression, fatigue, sleep disorders, and low self-efficacy among caregivers had a significant effect on caregiver burden. In another study, a positive relationship was found between the caregiver burden of parents and depression scores, and it was determined that as the caregiver burden increased, depression scores increased proportionally in individuals with depression.32 This result was similar to the results in our study.
In our study, a significant difference was observed between the caregiver burden scores of the parents who had children diagnosed with prematurity + CLD and ASD and the scores of the parents who had children diagnosed with other chronic diseases. Mothers of preterm infants experience more psychological distress in the early years than mothers of infants born at full term.33-35 The long-term struggle of premature babies in the neonatal intensive care unit (NICU) and the persistence of chronic diseases lead to a very tiresome process for the family. In the study conducted by Lohiya et al,36 it was reported that mothers of children with ASD had higher stress compared to mothers of children who had developmental delay without ASD, mothers of children with care needs who did not have developmental delay, and mothers of children who were typically developing. The increased needs of children with ASD and the responsibility of parents to meet these needs can complicate the life of the families.
The strengths of this study are that it was conducted in our developmental pediatrics clinic, which works one-to-one with children with special needs and at-risk children and their families. But there are some limitations of our study. The fact that it is a single-center study and was conducted in a group of chronic patients admitted to only 1 subspecialty outpatient clinic may cause the results of the study to be nongeneralizable and less representative of the population. The lack of a control group is an important limitation, and the study has progressed in this way because the developmental pediatrics outpatient clinic especially works with high-risk and special needs children. The study does not track changes in parental care burden and depression levels over time. A longitudinal study would provide a better understanding of how these conditions change and what factors influence these changes. The follow-up of these children and families continues in our clinic. In our future studies, data with longer follow-up will be available. Also at the time of the study, on February 6, 2023, Kahramanmaraş earthquakes occurred, and the study was conducted in the Southeastern Anatolia region, which was most affected by the earthquake. The possible effects of the earthquake may also have an impact on this situation.
Parents who are providing care for children with chronic diseases should be closely monitored for signs of depression. There is a need to increase awareness in both society and the professionals working on this subject and to expand the framework of health services to include providing support for parents in the caregiving process by creating integrated systems. As a take-home message, it is important to help parents cope with stressful situations in the management of chronic diseases and to be aware of their burden of care. In the treatment and caregiving process, it is recommended for health-care professionals working with families to also take the parents into consideration.
Funding Statement
This study received no funding.
Footnotes
Ethics Committee Approval: This study was approved by Ethics Committee of Gazi Yaşargil Training and Research Hospital, Health Sciences University, (Approval No: 337, Date: March 3,2023).
Informed Consent: Verbal and written informed consent was obtained from the patients' parents who agreed to take part in the study.
Peer-review: Externally peer-reviewed.
Author Contributions: Concept – Ş.G.B., S.Ç.; Design – Ş.G.B., S.Ç.; Supervision – Ş.G.B.; Resources – Ş.G.B.; Materials – Ş.G.B.; Data Collection and/or Processing – Ş.G.B.; Analysis and/or Interpretation – Ş.G.B., S.Ç.; Literature Search – Ş.G.B., S.Ç.; Writing – Ş.G.B., S.Ç.; Critical Review – Ş.G.B., S.Ç.
Declaration of Interests: The authors have no conflict of interest to declare.
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