Caregiver burden encompasses the physical, emotional, financial, and social challenges faced by individuals caring for a sick or disabled person. Spiritual well-being and social support have been identified as protective factors against psychological and physical issues, potentially alleviating caregiver burden. This study aims to explore the relationship between spiritual well-being, perceived social support, and caregiver burden among parents of children with disabilities.

A descriptive-analytical study was conducted with 260 family caregivers, selected through systematic random sampling. Data were collected using a demographic questionnaire, the Novak and Gaug Caregiving Burden Scale, the Paloutzian-Ellison Spiritual Well-being Scale, and the Zimet Social Support Questionnaire. Statistical analysis was performed using IBM SPSS version 22, with significance set at p < 0.05.

Among the caregivers, 148 (61.4%) reported a high level of caregiving burden, while 81% indicated moderate spiritual well-being and 14.5% reported high spiritual well-being. A significant negative correlation was found between spiritual well-being, social support, and caregiving burden (p < 0.05). Multiple linear regression analysis revealed that spiritual well-being (β = -0.41) and social support (β = -0.33) were the most significant predictors of caregiving burden. Additional significant predictors included social activities, underlying health conditions, age, caregiving duration, insurance coverage, and marital status (p < 0.05).

The high caregiving burden observed in this population, along with the inverse relationship between social support, spiritual well-being, and caregiving burden, underscores the need for strategies to enhance social support and spiritual well-being. These factors may serve as cost-effective, accessible interventions to alleviate caregiving burden.

Various challenges manifest as caregiving burdens when a child is born with a disability, significantly increasing the psychological stress experienced by family members—especially parents [1, 2]. Intellectual and physical disabilities are among the leading causes of disease burden worldwide, predominantly affecting children under five years of age. It is estimated that globally, 2–3% of children have intellectual disabilities, while approximately 15% exhibit variations consistent with such disabilities [3]. In the general population of children, the prevalence of disabilities is reported to be 4.4% [4]. According to UNICEF, as of November 2021, around 240 million children aged 2 to 17 worldwide live with disabilities [5]. In Iran, approximately 25,000 disabled children are born each year with severe physical and motor impairments [6].

The birth of a child with disabilities not only creates psychological pressure but also adversely affects the physical and mental health of parents [7]. Given that these children often require continuous assistance with daily activities, parents and family members frequently encounter substantial caregiving burdens [8, 9]. This burden manifests in numerous ways, including financial costs, limitations on social interactions, reduced engagement with community members, decreased time for other family members, and heightened discomfort or mental strain [10,11,12].

In the scientific literature, “caregiver burden” is defined as the negative objective and subjective outcomes resulting from caregiving, including physical, psychological, social, and economic problems [13]. Parents of children with disabilities tend to experience more health-related issues compared to families with healthy children due to the multifaceted pressures of caregiving [14,15,16]. Notably, research conducted by Park and colleagues highlighted that caregiver burden can significantly contribute to feelings of hopelessness and depression among parents of children with cerebral palsy [17].

Building on findings from previous studies, it is evident that parents of children with disabilities often turn to spirituality as a key coping mechanism. Spirituality, defined as “the search for or relationship with the sacred” [18], enables individuals to manage the significant stressors associated with their new caregiving responsibilities [19, 20]. Previous studies have shown that spiritual well-being is closely linked to parents’ ability to cope with the psychological stress associated with the caregiving burden [21, 22]. For example, a study by Omidi and colleagues revealed that improvements in spiritual well-being led to an overall enhancement in the well-being of mothers of disabled children [23]. Individuals with higher levels of spiritual well-being exhibit personal strength, and a stronger sense of control and social support [24].

Spiritual well-being is foundational to maintaining individual integrity and wholeness. Without it, other dimensions—biological, psychological, and social—cannot function optimally, and as a result, the highest possible quality of life becomes unattainable [25, 26]. In addition to spiritual well-being, social support has been proven to significantly impact overall life satisfaction and health outcomes [27,28,29]. Social support is defined as the emotional and psychological assistance that an individual receives or perceives from their family, friends, and community [25]. Both spiritual well-being and social support can act synergistically in bolstering individuals’ coping mechanisms [30, 31], with social support recognized as a crucial factor in improving quality of life, particularly for parents of children with disabilities [25].

A lack of social support can negatively affect both physical and mental well-being. Strong social support networks, especially those from family, act as vital moderators, helping individuals cope with and adapt to stressors, thereby enhancing satisfaction and improving health outcomes [32, 33]. Wright’s study [34] found that social support mitigates the negative effects of psychological stress, while research by Sur and colleagues [35], as well as Zhang and colleagues [36], emphasized the importance of social support in enhancing the quality of life and health outcomes for young people with physical disabilities.

Given that social support and spiritual health variables in the lives of parents of children with disabilities can not only foster feelings of peace and hope, but also enhance the parents’ ability to adapt and cope with life conditions, they play a significant role in improving their healthcare and well-being, this study was conducted to identify the relationship between caregiving burden in parents of children with disabilities and demographic characteristics, social support, and spiritual health in Iran. It is hypothesized that higher levels of perceived social support and spiritual well-being are associated with lower caregiving burden among parents of children with disabilities.

This descriptive, cross-sectional study aimed to examine spiritual well-being, social support, and caregiver burden among parents of children with intellectual and physical disabilities in Saveh, Iran. Based on a caregiver burden rate of P = 0.51 from similar studies [11, 13], with a margin of error (d = 0.04) and a 95% confidence interval, the required sample size was 246 participants. To account for potential non-response, a final sample of 260 parents was selected using systematic random sampling from a population of 1308, sourced from the Welfare Organization, physiotherapy centers, charitable associations, and comprehensive health centers.

A list of the population was prepared, and codes were assigned to each individual. The sampling interval was calculated by dividing the total population size (1308) by the desired sample size (260). A random starting point between 1 and 5 was then selected, after which participants were systematically chosen by adding the sampling interval to the initial random number. The sample size selected from each center consisted of 65 participants. Inclusion criteria for caregivers were: informed consent, no diagnosed chronic physical or mental illnesses (participants with a history of psychiatric medication use were excluded), cohabitation with the child, no financial compensation for caregiving, and at least six months of caregiving experience. Ethical approval was obtained from Saveh university in Iran, and written consent was collected.

The data collection tool in this study consisted of four sections:

Data were analyzed using SPSS version 22. Normality was confirmed via the Kolmogorov-Smirnov test. Descriptive statistics included means (standard deviations) for quantitative variables and frequencies (percentages) for qualitative variables. Independent t-tests, Pearson correlation, one-way ANOVA, post hoc analysis, and multiple linear regression were used to assess the relationships between demographic factors, spiritual well-being, social support, and caregiver burden. Missing data were handled using listwise deletion. Thus, when any of the variables were missing, the entire observation was excluded from the analysis. This was done using the SPSS software with the “missing = listwise” command.

Out of the 260 distributed questionnaires, 19 were excluded due to incomplete data, leaving 241 for the final analysis. The mean age of the participants was 49.8 ± 9.7 years. The majority (97.3%) were female, 224 participants (93%) were housewives, and 231 participants (95.6%) were married. A total of 224 caregivers (93%) had health insurance, and 146 participants (60.5%) reported limited social activities, such as visiting relatives and acquaintances. More than half (56%) did not engage in regular physical exercise, and 166 participants (69%) had underlying health conditions. In terms of caregiving duration, the most common duration was 21–30 years (28.6%), and less than 10 years (16.6%). Regarding the type of disability, the majority of individuals being cared for had physical disabilities (59%), while the remaining caregivers provided care for individuals with intellectual disabilities (see Table 1).

Our results indicated that as caregivers’ age and the number of years spent caregiving increased, their spiritual well-being improved, while their perceived social support decreased and their caregiving burden increased. Married caregivers reported higher levels of perceived social support and lower caregiving burden compared to divorced and widowed individuals. Additionally, caregivers who engaged in regular social activities and exercise experienced greater perceived social support and lower caregiving burden. Caregivers without insurance or those with underlying health conditions reported a higher caregiving burden(p < 0.05) (see Table 1).

148 caregivers (61.4%) experienced severe or very severe caregiving stress, while only 21 individuals (8.7%) reported mild caregiving stress (see Chart 1). The average caregiving burden was 86.1 ± 14.5, with the social, emotional, and time-dependent subscales reporting means and standard deviations of 20.5 ± 2.8, 18.6 ± 2.7, and 16.5 ± 5.2, respectively. Physical caregiving stress had the lowest mean score at 14.2 ± 3.1 (see Table 2).

The status of caregiving burden criteria for in-home caregivers

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The mean score for spiritual well-being was 81.5 ± 7.0, with existential and religious spiritual well-being subscale means of 44.0 ± 4.9 and 37.5 ± 4.8, respectively (see Table 3). Regarding perceived social support, family support was rated highest, with a mean score of 17.4 ± 4.8. Chart 2 shows that 195 caregivers (81%) reported moderate spiritual well-being, and 35 (14.5%) reported high spiritual well-being.

The status of spiritual health for in-home caregivers

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Correlations between caregiver burden, spiritual well-being, social support, and caregiver age (see Table 4) revealed a significant negative relationship between caregiver burden and both spiritual well-being (r = -0.625, p < 0.001) and social support (r = -0.647, p < 0.001). Age was positively correlated with caregiver burden (r = 0.319, p < 0.05) and spiritual well-being (r = 0.288, p < 0.05), and negatively correlated with social support (r = -0.255, p < 0.05) (see Table 4).

Multiple linear regression analysis identified social support (β = -0.36, p = 0.022) and spiritual well-being (β = -0.33, p = 0.044) as the most significant predictors of caregiving burden. Additionally, socio-demographic factors such as social activity, underlying health conditions, age, caregiving duration, insurance status, and marital status were significant predictors of caregiver burden. The model explained 29% of the variance in caregiver burden (Adjusted R² = 0.29) (see Table 5).

This study focused on the relationship between spiritual well-being, social support, and the caregiving burden of parents of children with disabilities. The results indicated that approximately 62% of family caregivers experience high levels of caregiver burden. In response to the first research question, our results indicate that caregiving burden is high in families with children with disabilities. This finding aligns with studies conducted by Rafati et al. [41], and Mirzaei et al. in Iran [42], Rodríguez et al. in Spain [43], and Clari et al. in Tanzania [44]. Caregiving can exert significant and enduring adverse effects on the physical, emotional, social, and financial well-being of family caregivers [45, 46]. Previous research has demonstrated a clear relationship between caregiving burden and mental health issues such as depression, anxiety, functional impairment, guilt, and resentment. Physical problems like hyperlipidemia, hyperglycemia, sleep disturbances, reduced immunity, and early transition to frailty syndrome have also been linked to caregiving burden [45, 47].

The psychological and social burden on family caregivers can even surpass that experienced by the individual they are providing care for, especially as the individual’s condition deteriorates [47, 48]. Consequences of high caregiving burden include reduced caregiving quality, diminished quality of life, and deterioration in both physical and mental health [47, 49]. Given the detrimental impacts of high caregiving stress on both the caregiver and the care recipient [50, 51], it is crucial to develop interventions that address mental health needs and alleviate caregiving burden.

Regarding the hypothesis about the relationship between spiritual well-being and caregiving burden, spiritual well-being emerged as the most significant predictor of caregiving burden, showing a meaningful negative correlation with caregiver burden. Consistent with these findings, health experts emphasize spirituality as a cost-effective and beneficial coping strategy for stress and depression in caregivers [52, 53]. Previous research highlights that spiritual well-being is a key variable in managing the challenges faced by caregivers [54], with individuals exhibiting higher levels of spiritual well-being reporting a more positive perception of their caregiving role and stronger connections with those they care for [55, 56]. Moreover, spiritual well-being offers protection against psychological and physiological illnesses for both the caregiver and care recipient [57,58,59]. Based on this and similar studies, spirituality can be an important resource for coping with caregiving challenges. Therefore, promoting spiritual well-being, particularly among informal and family caregivers, is recommended as an accessible and cost-effective method for improving the health of both the caregiver and the care recipient.

In relation to the hypothesis regarding the relationship between spiritual well-being and caregiving burden, this study’s findings revealed that perceived social support significantly reduces caregiving burden. This inverse relationship between social support and caregiving burden has been confirmed by earlier studies [60, 61]. To explain this topic, it can be said that individuals’ understanding of having social support when facing a stressful situation leads to an increase in their mental, physical, and psychological readiness regarding that issue or event, likely allowing them to have more time and resources for effective coping and to manage that situation better. As a result, they feel less stress and caregiving burden [62, 63]. Furthermore, research indicates that social support strengthens self-efficacy, increasing caregivers’ ability to adapt to challenges [64, 65].

Regarding socio-demographic variables and caregiving burden, this study demonstrated that increasing age, caregiving duration, lack of insurance, non-participation in social activities, widowhood or divorce, and underlying diseases contributed to increased caregiving burden. The link between aging and increased caregiving burden is likely due to declining physical and mental capabilities in older caregivers, as well as the emergence of chronic illnesses. Additionally, as caregivers age, the burden of caregiving often grows, exacerbated by years of caring for the patient. Consistent with these findings, Wolff et al. [66] found that longer caregiving durations lead caregivers to leave their jobs, reduce working hours, or accept lower-paying positions, contributing to an increased caregiving burden [67]. Other studies, such as those by Iavarone et al. [68], and Conde-Sala et al. [69], similarly confirm the relationship between increasing caregiver age and higher caregiving burden. Likewise, La et al. [70] demonstrated a correlation between longer caregiving durations and increased stress. These results highlight the need for policies aimed at reducing caregiving burdens, especially for older caregivers or those who have been in caregiving roles for extended periods.

The findings suggest that lacking of insurance, and not having support from an organization significantly contribute to a higher caregiving burden. The absence of insurance or organizational support further intensifies the financial strain, as caregivers are left to manage the additional patient care costs. These expenses combined with personal and family living costs create numerous challenges. Many caregivers reduce or quit their jobs to provide full-time care, while others are forced to work more to cover caregiving expenses. This increasing stress on caregivers ultimately raises their overall burden [71]. Consistent with our findings, Abbasi et al. [72] demonstrated an inverse relationship between family income and caregiving burden, while Pattanayak et al. [73] and Tsai et al. [74] found that caregivers with lower financial resources reported greater caregiving burdens.

Lack of participation in social activities was linked to an increased caregiving burden in this study, a finding that aligns with research showing that social connections protect against the negative effects of stressful or traumatic life events [75, 76]. Moreover, higher perceived social connection is positively related to mental health [1], self-esteem, and physical health [2]. This suggests that regular interaction with a supportive social group may serve as a buffer against the challenges of caregiving.

Finally, consistent with previous studies [77, 78], this study found that caregivers with underlying chronic diseases experienced a greater caregiving burden. This can be attributed to the continuous management and care required for their health, which gradually diminishes the caregiver’s physical and mental capacity, quality of life, and overall well-being, leading to an increased sense of burden. Moreover, poor general health, characterized by chronic physical and mental illnesses, reduces a caregiver’s ability to provide care and contributes to feelings of depression and burnout.

Among the limitations of this study, it is important to note that the cross-sectional nature of the study complicates the ability to establish causal relationships.

UNICEF:

United Nations International Children’s Emergency Fund

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Author notes

“MK and MT conceptualized the study and wrote the manuscript and provided the final draft. FR, NA and MA helped with study design. MRR, PHK, MK, ACL helped study implementation. All authors helped with manuscript writing. ACL was the advisor of the study and critically reviewed the manuscript and made revisions. All the authors read and approved the final manuscript“.

Correspondence to Mahmood Karimy.

The study was approved by the Ethics Committee of Saveh University of Medical Sciences, Ahvaz, Iran (Registration No: IR.SAVEHUMS.REC.1400.010). Written informed consent obtained from participants.

Not applicable.

The authors declare no competing interests.

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