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Influence of spirituality and religiosity on perceived social stigma among Iranian caregivers of children with autism spectrum disorder

Abstract

Background

The perceived social stigma of caregivers of children with autism spectrum disorder (ASD) may negatively affect caregivers’ mental health and, consequently, the quality of care for these children. Religious and spiritual well-being may serve as protective factors against such stigma. This study aimed to examine the relationship between spirituality, religiosity, and perceived social stigma among caregivers of children with ASD.

Method

This cross-sectional study was conducted from September 2022 to June 2023 in Qom, Iran. A total of 102 caregivers were recruited from specialized rehabilitation centers through convenience sampling. Participants completed the Multidimensional Inventory for Religious-Spiritual Well-being (MI-RSB 48) and the Stigma Scale for Chronic Illnesses (SSCI-8), along with a demographic questionnaire. Data were analyzed using descriptive statistics and multiple regression analysis.

Results

The mean perceived social stigma score was 16.85 ± 6.76, with 45.5% of participants reporting higher-than-average social stigma. All dimensions of spiritual-religious well-being, except belief in the afterlife and the experience of meaning, showed a significant negative correlation with perceived social stigma (P < 0.05). Multiple regression analysis revealed that the child’s age (β = 0.401, P = 0.018) and hope transcendent (β = 0.418, P = 0.012) were significant negative predictors of perceived stigma, explaining 59% of the variance.

Conclusion

The findings suggest that fostering transcendent hope and spiritual connectedness may mitigate the perceived stigma among caregivers of children with ASD, highlighting the potential of spirituality-based interventions in rehabilitation programs.

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Introduction

Autism Spectrum Disorder (ASD), is a broad group of neurodevelopment disorders that result in deficits in social communication, the presence of stereotyped and repetitive behaviours (such as shaking, looking at the finger, and self-stimulation) [1]. ASD is associated with a wide range of physical and mental disorders, including depression, anxiety, hyperactivity, and other physical conditions such as epilepsy, sleep, various aspects of the digestive system function [2].

Children with ASD frequently face stigmatization as a result of prevailing stereotypes, misconceptions, and discrimination prevalent in mainstream society. This stigma not only impacts the children with ASD themselves but also extends to those closest to them, particularly their parents [3]. Social stigma is a complex psychosocial process that begins with the act of labeling individuals and ultimately leads to their exclusion and isolation from society. This process not only separates individuals from their environment, but also devalues them both mentally and physically, rendering them insignificant and devoid of meaning. Consequently, these individuals become a source of shame within society [4, 5].

In the case of parents with children who have behavioral problems, they may experience a form of public stigma, commonly referred to as family or associational stigma. This stigma arises from the misconceptions held by others regarding the parents’ perceived lack of control or discipline over their child’s behavior. As a result, these parents may develop a sense of dependency on their child with ASD, which can leave them feeling uncomfortable and helpless. This dependency may also lead to negative emotions and thoughts about themselves, ultimately impacting their mental well-being [6].

To address the perceived social stigma, various factors can play a role, including spirituality and religion. Spirituality, in essence, is a way of existing in the world that fosters a sense of connection to oneself, others, and possibly a higher power or nature. It encompasses finding meaning in life and transcending the challenges and suffering that one may encounter on a daily basis [7]. On the other hand, religion is defined as an organized system of beliefs, practices, rituals, and symbols that aim to facilitate a closer connection to the sacred or sublime. It provides individuals with a framework through which they can seek solace and guidance in times of difficulty [8].

Much evidence supports the positive role of spirituality and religion in promoting health [9] and identifies it as an important coping mechanism and factor [10, 11]. Spirituality and religious adaptation strategies enhance patients’ self-esteem, create a sense of purpose and meaningful life, and increase psychological comfort, hope, and self-actualisation [12,13,14]. The large number of publications and the growing evidence of the relationship between spirituality and religion and health [15] have led to the inclusion of spirituality in medical education, so that the topic is consistently included in the curricula of several medical schools around the world, ranging from 40% of schools in Brazil to 59% of schools in the United Kingdom and 90% in the United States [16, 17].

While extensive research exists on spirituality and mental health [18,19,20], few studies have explored its role in alleviating stigma among caregivers of children with ASD, particularly in culturally religious contexts like Iran. This study addresses this gap by examining the relationship between spiritual-religious well-being and perceived social stigma in Iranian caregivers. This study aims to investigate how spiritual-religious well-being influences perceived social stigma among Iranian caregivers of children with ASD, using a multidimensional assessment framework. We hypothesize that higher levels of spiritual-religious well-being will be associated with lower levels of perceived social stigma, offering new insights into coping mechanisms for caregivers of children with ASD.

Theoretical framework

This study is grounded in two key theoretical perspectives: Goffman’s theory of stigma (1963) and Pargament’s theory of religious coping (1997). According to Goffman’s theory of stigma, stigmatization arises when individuals are labeled based on attributes that deviate from societal norms, leading to their devaluation and exclusion. Stigma can result in various psychological consequences, including isolation, shame, and decreased self-worth. Parents of children with ASD often face associative stigma, where their child’s condition becomes a reflection of their parenting abilities, thereby intensifying their emotional and social struggles [5].

Pargament’s theory of religious coping, on the other hand, emphasizes the role of spirituality and religion in helping individuals manage life’s challenges. Religious coping can be positive, fostering resilience, psychological comfort, and hope, or negative, leading to feelings of abandonment or doubt. In this study, we focused on the positive aspects of religious coping, specifically how spiritual and religious well-being can help caregivers manage the stress and emotional burden associated with the social stigma of raising a child with ASD [18]. Spirituality offers a pathway for finding meaning in adversity, promoting self-esteem, and enhancing psychological well-being [12, 13, 14].

By integrating these two theories, we propose that spiritual-religious well-being serves as a protective factor against the harmful effects of stigma, helping caregivers of children with ASD cope more effectively with societal judgment and emotional distress.

Method

Participants and the procedure

This cross-sectional study was conducted between September 2022 and June 2023 in Qom, Iran. A total of 102 participants were selected using the convenience sampling method, which was chosen due to its practicality in reaching a specific population of caregivers of children with ASD. Convenience sampling allowed us to recruit participants who were readily accessible and willing to participate, considering the limited availability of caregivers of children with ASD in Qom.

Participants were eligible for inclusion in the study if they met the following criteria: [1] aged 18 years or older; [2] identified as the primary caregiver, defined as providing daily care for the child for a minimum of 8 h; [3] resided in Qom, Iran, for at least 5 consecutive years prior to enrollment; [4] had a child diagnosed with ASD by a licensed psychiatrist or clinical psychologist; and [5] were able to communicate effectively and provide written informed consent to participate in the study. Participants were excluded from the study under the following conditions: [1] withdrawal or unwillingness to continue participation at any stage of the research; and [2] provided incomplete responses to the questionnaires.

Measures

The study utilized several measures to gather data, including the Demographic Characteristics Questionnaire, the Spiritual Religious Well-being Questionnaire, and the stigma self-report scale.

To assess religiosity and spirituality, the researchers employed the Multidimensional Inventory for Religious-Spiritual Well-being (MI-RSB 48) developed by Unterrainer in 2010. This inventory consists of various sub-scales, such as general religiosity, connectedness, hope transcendent, hope immanent, forgiveness, and experiences of sense and meaning. Participants responded to the items using a Likert scale, ranging from strongly disagree (score 1) to strongly agree (score 6). The reliability and validity of the Persian version of the MI-RSB 48 has been well-established in previous studies. The original MI-RSB 48 scale demonstrated strong internal consistency with a Cronbach’s alpha of 0.89 [21]. The Persian version of MI-RSB 48 demonstrated acceptable reliability (α = 0.81) in prior studies [22].

To assess perceived social stigma, the Stigma Scale for Chronic Illnesses – 8-item version (SSCI-8), developed by Molina et al. (2013), was utilized [23]. This scale comprises eight items rated on a Likert-type response format. The original English version demonstrated strong internal consistency, with a Cronbach’s alpha of 0.89. The SSCI-8 showed strong construct validity (CFI = 0.92, RMSEA = 0.06) and internal consistency (α = 0.87) in the Iranian context [24].

Data analysis

Data analysis was conducted using the Statistical Package for the Social Sciences) SPSS (v.16 software. Descriptive statistics were utilized to summarize the demographic characteristics of the participants and the main variables of interest. Independent t-tests and One-way analysis of variance (ANOVA) were used to assess differences in perceived social stigma between caregivers with varying demographic characteristics. Pearson’s correlation was applied to explore the relationships between spirituality, religiosity, and perceived social stigma. Finally, multiple linear regression analysis was conducted to determine the predictive influence of spirituality and religiosity on perceived social stigma, controlling for demographic variables. All statistical tests were considered significant at p < 0.05.

Results

The study sample had a mean age of 35.10 years (SD = 5.80), with participants ranging from 18 to 41 years old. The majority of participants (96%) were married, and 84.3% were housewives. The characteristics of the study participants can be found in Table 1.

Table 1 Socio-demographic information of the study sample (n = 102) *

As shown in Table 2, the mean perceived social stigma score was 16.85 ± 6.76, with 45.5% of participants reporting higher-than-average stigma levels. Regarding spiritual-religious well-being, the highest score was observed in the General Religiosity dimension (39.0 ± 9.9), while the lowest was in the Hope Transcendent dimension (25.9 ± 7.3).

Table 2 The scores of religious spiritual well-being and social stigma

Table 3 illustrates the relationship between spiritual-religious well-being components and perceived social stigma. Significant negative correlations were observed between spiritual-religious well-being dimensions (except afterlife belief and connectedness) and perceived stigma (all p < 0.05).

Table 3 Correlation between religious spiritual well-being components and perceived social stigma
Table 4 Multiple regression analysis for predictors of perceived social stigma

Multiple regression analysis revealed that hope transcendent (β = -0.418, P = 0.012) and child age (β = 0.401, P = 0.018) were significant predictors of perceived stigma, collectively explaining 59% of the variance. Table  4 presents the final regression model, summarizing the impact of spiritual-religious well-being dimensions and demographic variables on perceived stigma.

Discussion

The purpose of this study was to examine the connection between spiritual-religious well-being and perceived social stigma in caregivers of children with ASD. All spiritual-religious aspects, except for the afterlife and experience of meaning and content, were found to have a significant negative correlation with perceived social stigma. This suggests that spirituality and religion play a crucial role in protecting individuals from social stigma and can be used as a coping mechanism for those facing such challenges.

This finding aligns with a previous study conducted by Najafi and Jazi (2019), which demonstrated the impact of spiritual therapy on perceived social stigma and anxiety in mothers of children with ASD [25]. Additionally, Coleman et al. found that greater spirituality was associated with lower levels of perceived stigma in cancer patients [26]. Taheri et al. also discovered a significant negative relationship between stigma and spiritual well-being (r=-0.48, P < 0.001) in patients with mental illness [27]. These findings are further supported by the studies of Pandya, Oti-Boadi, and Al-Kandari, who identified religion and spirituality as effective coping strategies for improving the well-being of parents of children with ASD [28,29,30]. The explanation for these findings lies in the fact that individuals who are more religious tend to have greater self-control, which shields them from external influences. Consequently, they are less likely to encounter unfavorable environmental conditions. Spirituality and religion may reduce perceived social stigma in caregivers children with ASD by fostering positive qualities such as patience, enhanced problem-solving skills, and improved coping abilities [25, 31]. Additionally, practices such as communicating with God, seeking divine guidance, and believing in God as a protector and helper can provide meaning to challenging circumstances, strengthen one’s sense of self-worth, and promote flexibility.

The age of the child and the concept of hope transcendent emerged as the most influential factors in predicting stigma. It suggests that caregivers of older children may encounter a higher degree of stigma compared to those caring for younger children. This finding aligns with Manasa’s study, which demonstrates a significant correlation between the level of stigma and the child’s age at the time of admission [32]. Additionally, Harvey’s research reveals that parents of older children perceive future negative events as more likely [33].

Upon analyzing this discovery, it becomes apparent that as children mature, society places greater expectations on them to be independent. Consequently, caregivers of children with ASD face escalating stigma due to their children’s ongoing dependency and constant need for support. Furthermore, as children with ASD grow older, their behavioral issues and challenges tend to intensify, making their differences more noticeable. This, in turn, amplifies societal expectations and necessitates increased care, ultimately leading to heightened stigma for caregivers.

Moreover, there is a strong correlation between hope transcendent and perceived stigma, indicating that caregivers who possess a more optimistic outlook on the future are likely to experience less stigma [34]. These findings align with previous research, highlighting the significance of parental hope in effectively coping with the challenges of raising children with ASD. Caregivers who maintain positive attitudes towards their child’s future exhibit greater adaptability in managing the complexities associated with autism care.

The pervasive stigma reported by Iranian caregivers (45.5% experiencing higher-than-average stigma) may reflect broader societal attitudes toward caregiving roles. While attitudes toward the social status of nursing in Iran are moderate, they often reflect a lack of awareness of the profession’s skills and competencies [35]. This subtle undervaluation of caregiving roles—rooted in limited recognition of their complexity—likely extends to caregivers of children with ASD, whose responsibilities are similarly marginalized. The intersection of cultural norms (e.g., underestimating caregiving expertise) and ASD-related stigma creates a unique burden for Iranian caregivers, compounding their isolation and reinforcing societal misconceptions. Oduyemi et al. [36] conducted a study that revealed over half of the respondents who faced negative stigma felt judged by others for their parenting of a child with ASD. Furthermore, Cohen and colleagues’ research [37] found that stigma was the most frequently discussed topic during group interviews. Interestingly, these rates were higher than those reported by Japanese and American mothers in Kamei’s study. According to Kamei [38], only 28.1% of Japanese mothers and 22.2% of American mothers experienced social stigma and rejection. This difference in research findings may be attributed to cultural variations.

Limitations

This study was conducted as a cross-sectional study, which presents a challenge in establishing causal relationships between religious-spiritual well-being, and experienced social stigma. Future research should consider employing longitudinal and experiential methods to explore cause-and-effect relationships. Additionally, this study relied on self-reported data to assess well-being, religion, and social stigma, which may introduce certain biases. To address these limitations, it is recommended to analyze the mechanisms and factors influencing these relationships in order to develop interventions aimed at reducing stigma and improving health outcomes.

Conclusion

This study underscores the pervasive burden of social stigma experienced by caregivers of children with ASD, while highlighting the protective role of spiritual well-being, particularly hope transcendent, in mitigating such stigma.

Clinically, integrating spiritual components (e.g., transcendent hope workshops, religious support groups) into ASD caregiver programs may reduce stigma-related distress. Training healthcare providers to address spiritual needs could enhance caregiver resilience and quality of life. Future research should explore tailored spiritual interventions, assessing their effectiveness in different cultural contexts to develop evidence-based frameworks for holistic caregiver support.

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

ASD:

Autism Spectrum Disorder

MI-RSB 48:

Multidimensional Inventory for Religious-Spiritual Well-being

SSCI-8:

Stigma Scale for Chronic Illnesses 8-item version

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Acknowledgements

This research is a part of the findings from a research project with the code of ethics IR.MUQ.REC.1401.063. The researchers would like to express their sincere gratitude and appreciation to all individuals who contributed to the successful execution of this study, especially the mothers of children with ASD who participated in the study.

Funding

This work was supported by the Qom university of medical science.

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Contributions

Study Design: ZTK, MM. Data Collection: MM, EAY, EA. Data Analysis: ZT. Manuscript Writing: MST, ZTK, MHA.Manuscript Revision and Editing: MST, ZTK, MHA, MM, EAY, EA. All authors have thoroughly reviewed and endorsed the final manuscript.

Corresponding author

Correspondence to Zahra Taheri-Kharameh.

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Ethics approval and consent to participate

This study adhered to the principles outlined in the Declaration of Helsinki, ensuring ethical conduct throughout the study. We obtained official approval from the Medical Ethics Committee at Qom University of Medical Sciences. The approval was granted with a registration number of IR.MUQ.REC.1401.063. To ensure the ethical integrity of our study, we obtained written informed consent from all participants before including them. It is crucial to note that we respected the autonomy of all participants, granting them the freedom to withdraw from the study at any given time.

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Not applicable.

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The authors declare no competing interests.

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The authors state that there is no competing of interest in the present study.

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Shokouhi-Tabar, M., Maarefi, M., Abbasi Yazdi, E. et al. Influence of spirituality and religiosity on perceived social stigma among Iranian caregivers of children with autism spectrum disorder. BMC Psychol 13, 432 (2025). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s40359-025-02749-2

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