Background
One in four children worldwide is diagnosed with a chronic illness every year [1]. Today, numerous factors can increase children’s chances of developing chronic illnesses, such as climate change, pollution, harmful commercial advertisements, unhealthy lifestyles and diets, injuries and violence, conflict, migration, and inequality [2]. Chronic illnesses last longer than 12 months, require continuous medical attention, limit daily activities, and hamper one’s quality of life [3]. Diabetes mellitus, epilepsy, autism spectrum disorder, cerebral palsy, cancer, cystic fibrosis, congenital anomalies, and hemolytic anemia are the most common chronic illnesses, and bronchial asthma is the most prevalent [4].
In Saudi Arabia, the prevalence of chronic illnesses and disabilities has rapidly increased among children and adolescents over the past 60–70 years [5], and 67% of the country’s population is children under the age of 15 [6]. This has led to advancements in healthcare services but has also made chronic illnesses the most pressing health issue among Saudi children [5].
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Raising a child with a chronic illness poses a significant burden on family members, especially those who share an emotional bond with the child and are directly involved in caregiving [7]. Children with chronic illnesses can require frequent hospitalization and home care, which can pose an additional burden on the caregiver [1]. According to Liu, Heffernan, and Tan, caregiver burden is defined as “the level of multifaceted strain perceived by the caregiver from caring for a family member and/or loved one over time” [8, p. 442].
Studies have demonstrated a significant association between caregiver burden and psychological distress [9, 10]. They have shown that caregivers tend to neglect their needs and restrict their rest time, social interactions, and other daily activities [11]. Furthermore, because the caregiver’s life tends to revolve around the care recipient, caregiver burden affects the caregiver’s quality of life [10, 12, 13]. Thus, caregivers can experience a high degree of caregiver burden with social isolation, heightened stress levels, and a reduced sense of personal accomplishment [11].
Parents of children with illnesses suffer from more stress than parents of healthy children, experiencing higher levels of unemployment and parent separation rates [10]. Additionally, they suffer from decreased quality of life and deterioration in physical and psychological health [8]. Pinquart meta-analyzed 460 studies and found that compared with parents of healthy children, parents of children with a chronic illness showed small to moderate elevations in depressive symptoms [14]. These stresses stem from illness management challenges, economic hardships, and concerns about the child’s future [12, 13, 15]. Such caregivers sometimes receive high levels of satisfaction from their caregiving experience, but they tend to unintentionally neglect their other children, which places them in continuous guilt [14, 16].
Social support has been found to reduce caregiver burden [9]. Perceived social support from friends and family is linked to increased caregivers’ well-being [7]. Pinquart emphasized the importance of social support in reducing the stress associated with caregiving [14]. Marsack and Hopp found that caregivers with assistants experience less pressure than those without assistants [9]. Furthermore, a stronger sense of family coherence is linked to higher self-efficacy, hope, resilience, and optimism, while reducing stress in caregiving parents [17].
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Few studies have investigated caregiver burden in Saudi Arabia, focusing primarily on adult patients with chronic illnesses [18], a limited range of chronic conditions [12], or small sample sizes [19]. Additionally, the relationship between caregiver burden, stress, and social support in the context of caring for children with chronic illnesses remains unclear. Given the high prevalence of chronic illnesses among children in Saudi Arabia, there is a lack of research on how caregiver burden is related to stress and social support in this population. To enhance the quality of life for both caregivers and their children and to foster the development of targeted psychosocial interventions, it is essential to first assess the prevalence of caregiver burden and its association with perceived stress and social support. Therefore, this study aimed to (1) determine the levels of caregiver burden, perceived stress, and perceived social support and (2) examine the association between these three constructs among parents of children with chronic illnesses in Saudi Arabia. Our study was guided by the stress-buffering theoretical model, which suggests that social support can protect individuals facing stressful events, such as having children diagnosed with chronic illnesses and the resulting caregiving burden, from negative psychological effects [20]. Based on this model and the existing empirical evidence, we hypothesized that parents perceived social support would negatively correlate with perceived stress and caregiver burden.
Methods
Design, setting, and sample
This cross-sectional correlational study was conducted in Eastern Province, Saudi Arabia. Through convenience sampling, participants were recruited from three different hospitals in the Eastern providence of Saudi Arabia, all of which have pediatric inpatient and outpatient facilities.
Parents with at least one child who has a chronic illness or disability for over 12 months, requiring ongoing medical treatment—regardless of the need for special home care—were included in the study if they could complete a survey in Arabic. Parents who were not involved in their child’s care or who could not complete the survey in Arabic were excluded from the study. Using the G*Power application, we determined that a minimum of 164 participants were required to achieve the study aims with an alpha of 0.05, moderate effect size of (f) 0.25, and power of 0.95.
To collect data, we created an online survey using QuestionPro software. This survey was pilot tested with ten eligible participants to ensure clarity and readability. These participants provided feedback on their understanding of the survey items and commented on the language used. Based on their input, minor adjustments were made to improve the survey language. The participants from the pilot test were later excluded from the full-scale study. Two recruitment strategies included the use of flyers and research assistants were employed. A flyer was designed to provide information about the study, including a barcode for accessing the survey. Additionally, a research assistant contacted eligible parents in the selected settings to assess their interest in participating. Those who expressed interest received an invitation message and survey link via WhatsApp, a popular social networking application in Saudi Arabia. Data was collected over four months, from May 14th until August 23rd, 2023.
Measures
Caregiver burden was measured using the abridged Arabic version of the Zarit Burden Interview (ZBI-A) [21]. This scale has been developed based on the abridged version of the Zarit Burden Interview, a 12-item scale that measures personal and role strain perceived by caregivers of patients with disabilities [22, 23]. Items on the ZBI-A were rated on a 5-point Likert scale ranging from 0 (no burden) to 4 (high burden). We calculated the scale’s total score, which ranges from 0 to 48 points. Higher scores represent a greater degree of caregiver burden. To measure the strain the parents perceived in caring for their child with a chronic illness, we referred to the “patient” as “your child to whom you provide care.” The ZBI-A has demonstrated adequate internal consistency reliability of 0.77, and we obtained permission to utilize it [21].
Perceived social support was measured using the Arabic version of the Multidimensional Scale of Perceived Social Support [24]. This scale has been developed based on the Multidimensional Scale of Perceived Social Support, a 12-item scale that measures perceived support from family, friends, and significant others [25]. Responses on the scale were rated on a seven-point Likert scale ranging from 1 (very strongly disagree) to 7 (very strongly agree). We computed the mean score, which ranged from one to five, to identify the level of perceived social support. The Arabic version of the Multidimensional Scale of Perceived Social Support has demonstrated an adequate internal consistency reliability of 0.87 [24]. Permission to use the MSPSS in Arabic was granted [24].
Perceived stress was measured using the Arabic version of the Perceived Stress Scale [26]. This scale has been developed based on the Perceived Stress Scale, a 10-item scale that measures the degree to which one perceives life as unpredictable, uncontrollable, and overloading [27]. Responses on the scale were ranked on a five-point Likert scale ranging from 0 (Never) to 4 (Very Often). The total score on the scale ranges from 0 to 40 points, and higher scores indicate higher levels of perceived stress. The Arabic version of the Perceived Stress Scale has demonstrated an adequate internal consistency reliability of 0.743 [26]. We also collected data on the parents’ sociodemographic information and data on their children’s illnesses (see Table 1).
Table 1
Sociodemographic characteristics of the parents and illness-related information of the children (N = 206)
Variable | Mean (SD) | Frequency | Percentage |
|---|---|---|---|
Age of the parent (Years) | 39.95 (8.193) | ||
Relationship with the child | |||
Mother | 162 | 78.6 | |
Father | 44 | 21.4 | |
Nationality | |||
Saudi | 198 | 96.1 | |
Non-Saudi | 8 | 3.9 | |
Marital status | |||
Married | 197 | 95.6 | |
Divorced | 7 | 3.4 | |
Widowed | 2 | 1.0 | |
Education level | |||
Less than high school | 21 | 10.2 | |
High school | 45 | 21.8 | |
2–5 years of college | 111 | 53.9 | |
Graduate | 29 | 14.1 | |
Employment Status | |||
Employed | 83 | 40.3 | |
Self-employed | 4 | 1.9 | |
Unemployed | 108 | 52.4 | |
Retired | 11 | 5.3 | |
Monthly income | |||
Less than SAR 3000 | 48 | 23.3 | |
SAR 3000–5000 | 34 | 16.5 | |
SAR 5000–10,000 | 55 | 26.7 | |
More than SAR 10,000 | 69 | 33.5 | |
Number of children | |||
None | 21 | 10.2 | |
1–5 | 156 | 75.7 | |
More than five | 29 | 14.1 | |
Caregiving period | |||
1–3 years | 84 | 40.8 | |
3–5 years | 28 | 13.6 | |
More than five years | 94 | 45.6 | |
Age of the child (Years) | 8.897 (4.67) | ||
Gender of the child | |||
Female | 91 | 44.2 | |
Male | 115 | 55.8 | |
Number of chronic illnesses | |||
One Two More than two | 155 29 22 | 75.2 14.1 10.7 | |
Type of chronic illness | |||
Cerebral palsy | 8 | 3.6 | |
Respiratory disease | 19 | 8.6 | |
Diabetes mellitus | 54 | 24.5 | |
Gastrointestinal disease | 10 | 4.5 | |
Congenital heart disease | 13 | 5.9 | |
Cancer | 14 | 6.4 | |
Kidney disease | 12 | 5.5 | |
Epilepsy | 17 | 7.7 | |
Hematology disease | 45 | 20.5 | |
Physical disability | 28 | 12.7 |
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Data analysis
All statistical analyses were performed using the Statistical Package for Social Sciences version 28. First, we computed descriptive statistics to report the characteristics of the sample using frequencies, means, and standard deviations. Next, we computed mean scores on the scales employed to determine the level of caregiver burden, perceived social support, and perceived stress among parents of children with chronic illnesses in Saudi Arabia. To determine the association between caregiver burden, perceived social support, and perceived stress, we used Spearman’s correlation coefficients (rho). This method was selected because the normality assumption for parametric tests, such as the Pearson correlation coefficient, was not attained, and the data on caregiver burden and perceived social support were normally distributed.
Ethical considerations
Institutional Review Board (IRB) approvals were obtained from the three hospitals prior to data collection. We also followed the Strengthening the Reporting Observational Studies in Epidemiology guidelines. The online survey started with the Participant Information Sheet (PIS), which included information about the study purpose, eligibility criteria, voluntary nature of participation, benefits, and potential risks of participating in the study, as well as other related details. Next, participants were asked to check boxes of statements that emphasized their understanding of the PIS. The first page of the survey stated that submitting the survey would be considered as one’s informed consent to participate in the study. It also stated that one could withdraw from the study, and their withdrawal would not affect their child’s treatment. Participants’ anonymity was ensured by assigning ID codes to each participant.
Results
A total of 206 parents completed the survey, exceeding the minimum number of samples we required. Table 1 presents the sociodemographic data of the parents and illness-related information of the children. Approximately two-thirds of the participants (and the most) were mothers of the children (78.6%). Participants’ ages ranged from 18 to 62 years, with a mean age of 39.95 ± 8.2 years. Nearly all participants (96.1%) were married and of Saudi nationality (95.6%). More than half of the participants had 2–5 years of college education (53.9%), and nearly half were unemployed (52.4%). Additionally, approximately half of the participants (45.6%) had caregiving experience of more than five years. The mean age of the children was 8.9 ± 4.67 years, and around half of them were males (55.8%). Most children had one chronic illness (75.2%), and 10.7% had more than two chronic illnesses. Diabetes mellitus was the most common disease, accounting for 24.5% of the children’s chronic illnesses.
Table 2 presents the means, standard deviations, Cronbach’s alphas (α), and Spearman’s correlation coefficients (rho) for caregiver burden, perceived social support, and perceived stress. The Cronbach’s alpha coefficient of all three variables was acceptable (α = 0.85 for caregiver burden, α = 0.92 for perceived social support, and α = 0.79 for perceived stress). On average, the participants reported mild-to-moderate levels of caregiver burden (M = 17.60, SD = 8.81, range = 0 − 39), moderate levels of perceived stress (M = 18.91, SD = 6.58, range = 2 − 35), and high levels of perceived social support (M = 5.12, SD = 1.32, range = 1 − 7).
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Table 2
Descriptive statistics, Cronbach’s alphas, and Spearman’s correlation coefficients (rho) (N = 206)
Variable | α | M (SD) | Range | 1(rho) | 2(rho) | 3(rho) |
|---|---|---|---|---|---|---|
1. Caregiver burden | 0.85 | 17.60 (8.81) | 0 − 39 | - | ||
2. Perceived social support | 0.92 | 5.12 (1.32) | 1 − 7 | -0.36** | - | |
3. Perceived stress | 0.79 | 18.91 (6.58) | 2 − 35 | 0.65** | -0.45** | - |
Spearman’s correlation analysis revealed a significant negative association of perceived social support with caregiver burden (rho = -0.36, p < 0.01, 95% CI [-0.47, -0.23]) and perceived stress (rho = -0.45, p < 0.01, 95% CI [-0.55, -0.33]). Meanwhile, a significant positive association was found between caregiver burden and perceived stress (rho = 0.65, p < 0.01, 95% CI [0.56, 0.72]). Table 3 shows the frequency and percentage of different levels of caregiver burden, perceived social support, and perceived stress.
Table 3
Frequencies and percentages of the different levels of Caregiver Burden, Perceived Social Support, and perceived stress (N = 206)
Variable | Frequency | Percentage |
|---|---|---|
Caregiver burden | ||
No to mild burden | 38 | 18.4 |
Mild to moderate burden | 85 | 41.3 |
High burden | 85 | 41.3 |
Perceived social support | ||
Low support | 17 | 8.3 |
Moderate support | 66 | 32 |
High support | 123 | 59.7 |
Perceived stress | ||
Low stress | 44 | 21.4 |
Moderate stress | 137 | 66.5 |
High stress | 25 | 12.1 |
Discussion
The present study was designed to determine the levels of caregiver burden, perceived stress, and perceived social support and their association among parents of children with chronic illnesses. It obtained several insightful results. Parents of children with chronic illnesses reported mild-to-moderate levels of caregiver burden, moderate levels of perceived stress, and high levels of perceived social support. Another important finding was that high levels of perceived social support were associated with lower levels of caregiver burden and perceived stress. In contrast, high levels of caregiver burden were associated with high levels of perceived stress among parents of children with chronic illnesses.
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Our finding regarding the level of caregiver burden aligns with that obtained by Adib-Hajbaghery and Ahmadi, who conducted a similar study using the Zarit Burden Inventory and found that most participants experienced mild-to-moderate levels of caregiver burden [28]. Similarly, another cross-sectional study in Jordan found moderate levels of caregiver burden in a sample of parents caring for their children with chronic illnesses [29]. Previous research has found that caregivers’ experience was influenced by several factors, including social, psychological, and financial burdens [29, 30]. Additionally, the caregiver’s educational level could be another key factor influencing the caregiver’s experience. In this study, 53.9% of the participants had 2–5 years of college education, suggesting that caregivers with higher educational levels may be able to manage demanding situations and seek social support more effectively. Consistently, studies have shown that caregivers with lower educational levels experience higher burdens [28, 31]. These factors may have contributed to our finding concerning caregiver burden.
Our findings indicate a moderate level of perceived stress, which is consistent with previous research showing that parents of children with chronic illnesses experience greater stress and caregiving burdens compared to parents of healthy children [32, 33]. Pinquart discovered that several factors influence perceived stress and caregiver burden, including the child’s behavioral issues, the parent’s mental health, and the quality of marital and social support [32]. Cousino found that poorer psychological adjustment in caregivers and children with chronic illnesses is linked to higher levels of parental stress [33]. Our findings can be explained by Sulkers et al., who found that a caregiver’s stress is predicted by having only one sick child and no other children. In our study, most participants had more than one child, which may account for the moderate levels of perceived stress observed [34].
Our observation regarding the high level of perceived social support may be influenced by Saudi Arabia’s family-oriented culture. Several studies highlighted the interplay between social support and cultural factors in the context of children’s health in Saudi Arabia, particularly among children with sickle cell disease [35], those with cognitive disabilities [36], and those with autism [37]. Thus, Saudi Arabia’s sociocultural factors can impact the health of caregivers and children.
Our findings indicate a strong positive relationship between caregiver burden and perceived stress. This is consistent with previous research that highlighted a connection between caregiver burden and psychological distress [9]. Additionally, a recent systematic review revealed that depression among caregivers contributes to the increased burden experienced by parents caring for children with cerebral palsy [7].
The finding of a negative association between social support and perceived stress, as well as caregiver burden, reinforces the idea that perceived social support influences caregiver burden. Higher levels of perceived social support are associated with greater life satisfaction [38] and improved caregiver well-being [7]. A systematic review of 37 studies found that social support from significant others and family members was consistently associated with lower distress, reduced psychopathology, and better adaptation in parents caring for their children with cancer [39]. The buffering hypothesis model explains this inverse association by which the buffering effect of social support protects individuals from stressful situations [20]. Support can mediate the connection between the stress experiences and their emotional responses by reducing or preventing stress appraisal [20]. Given these findings, social support could be a significant protective factor in designing intervention programs to mitigate the stress caused by the caregiver burden. This insight is essential for policymakers to develop future psychosocial support interventions and programs for parents caring for their children with chronic illnesses.
This study had several limitations. First, its cross-sectional design prevents establishing a causality relationship between variables, necessitating longitudinal studies for a comprehensive analysis. Second, the convenience sampling may have introduced bias, with only 21.4% of participants being fathers, despite literature indicating that mothers typically handle more caregiving responsibilities [40]. There is a risk of retrospective response bias from online self-reported questionnaires. Future research should focus on the generalizability of these findings, considering cultural norms surrounding caregiver stress and exploring caregivers’ experiences across different subgroups.
Additionally, longitudinal and interventional studies could support or challenge the current conclusions. Despite these limitations, this study holds great significance as it is the first to clearly illustrate the connection between caregiver burden and perceived stress, considering perceived social support among parents of children with chronic illnesses in Saudi Arabia. These findings pave the way for further exploration and intervention strategies to alleviate caregiver stress.
Conclusion
The burden experienced by caregivers is positively linked to perceived stress, while perceived social support negatively correlates with caregiver burden and perceived stress among parents of children with chronic illnesses. These findings emphasize the need for interventions aimed at reducing the stress and burden faced by these parents, as well as improving their social support. Therefore, healthcare providers should develop tailored, family-focused approaches and programs to alleviate caregiving stress and burden. Additionally, our findings encourage further exploration in this area. Future research should consider longitudinal designs to better understand the risk and protective factors associated with parenting stress and caregiver burden, as well as the pathways leading to these issues and the role of social support. Despite its limitations, this study enhances our understanding of caregiver burden, perceived stress, and perceived social support among parents of children with chronic illnesses. It contributes to the existing literature by indicating that caregiver burden and perceived stress are inversely influenced by several factors, including perceived social support. We hope this study will inspire further investigation into this crucial area, particularly regarding the variables that contribute to caregiver burden and stress.
Relevance for clinical practice
The results emphasize the essential role of perceived social support in alleviating caregiver burden and stress among parents of children with chronic illnesses. They highlight the importance of holistic approaches in managing the well-being of both caregivers and children. This underscores the vital responsibility and commitment of healthcare professionals to provide comprehensive care. Our study contributes to existing knowledge by stressing the urgent need to prioritize interventions that strengthen social support networks, which can effectively reduce the psychological impact on caregivers. Additionally, understanding how cultural and educational factors influence caregiver experiences can inform the development of tailored, family-centered intervention programs, further enhancing health professionals’ commitment and dedication. Implementing tested psychosocial interventions designed to reduce caregiver burden and adapting them to meet the specific needs of parents caring for children with chronic illnesses is crucial. For instance, the multidimensional intervention comprising psychoeducation, skill-building, and peer support, developed by Elsheikh et al. for caregivers of stroke patients in Egypt, serves as a valuable model [41].
Acknowledgements
We acknowledge the contributions of our research assistants Noor Qaw, Ali Alamir, Hani Alkhalif, Fatimah Alhulaymi, and Hanin Alkhalifah during data collection.
Declarations
Ethics approval and consent to participate
IRB Approvals were obtained from King Fahad University Hospital [IRB-2023-04-094], Qatif Central Hospital [QCH-SREC0 35/2023], and Maternity and Child Hospital Al-Ahsa [31-EP-2023] all in the Eastern providence of Saudi Arabia. The first page of the survey stated that submitting the survey would be considered as one’s informed consent to participate in the study. It also stated that one could withdraw from the study, and their withdrawal would not affect their child’s treatment. Participants’ anonymity was ensured by assigning ID codes to each participant.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
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