Investigating the Relationship Between Caregiver Burden and Health Literacy Among Caregivers of Older Adult Stroke Survivors: A Comparison Between Iran and Iraq

Abstract

The growing aging population has led to an increasing number of older adults with chronic illnesses such as stroke, placing significant caregiving responsibilities on informal caregivers. However, little is known about how health literacy (HL) affects caregiver burden (CB), particularly in Middle Eastern countries. This study explores the relationship between CB and HL among informal caregivers of older adult stroke survivors in Iran and Iraq. Conducted in 2021 with 300 participants selected through convenience sampling from Ghaem Hospital in Iran and Al-Sadr Hospital in Iraq, data were collected using the Health Literacy Instrument for Adults (HELIA) and the Caregiver Burden Inventory (CBI). Results indicated that Iranian caregivers experienced higher CB and HL than Iraqi caregivers. A multivariable linear regression analysis showed that CB was significantly associated with HL (β = −.25, p < .01), caregiver age (β = .21, p < .05), and the age of the stroke survivor (β = .18, p < .05), explaining 15% of the variation in CB. Higher HL correlated with lower CB, while older caregiver and patient ages were linked to higher CB. The study concludes that improving HL through educational programs can reduce CB, and health officials should consider demographic factors to enhance caregiver support.

Keywords

caregiver burden health literacy elderly stroke survivors informal caregivers Iran Iraq cross-sectional study

What this paper adds

Comparison of CB and HL: Highlights differences in caregiver burden (CB) and health literacy (HL) between Iran and Iraq.

Inverse Relationship: Establishes that higher HL is linked to lower CB among caregivers.

Demographic Influences: Identifies caregiver and patient age as factors influencing CB.

Educational Needs: Emphasizes the importance of educational programs to enhance HL and reduce CB.

Cultural Context: Shows how cultural differences affect CB and HL, suggesting tailored interventions.

Applications of study findings

Policy Development: Inform healthcare policies supporting informal caregivers.

Educational Programs: Develop programs to improve HL among caregivers.

Support Services: Create tailored support programs for caregivers.

Healthcare Training: Train professionals to support caregivers effectively.

Community Awareness: Raise awareness and provide community-based support.

Future Research: Guide further research on HL and CB in different regions.

Resource Allocation: Efficiently allocate resources to enhance HL and reduce CB.

Introduction

The World Health Organization (2015) predicts a significant increase in the global aging population, estimated to grow by 21.1%, reaching 2 billion people by 2050. Similarly, the older adult population in the United States is expected to rise to 85.7 million by the same year (Ortman et al., 2014; WHO, 2015). In Iran, demographic studies project that the population over 60 will constitute 21.7% by 2050 (Mohsen Al-Gimavi et al., 2023). Similarly, Iraq is also experiencing a gradual increase in its older adult population, with estimates suggesting that individuals aged 60 and above will comprise approximately 10.2% of the total population by 2050 (Bongaarts, 2020). Several factors contribute to this demographic shift, including increased life expectancy, declining fertility rates, and improved access to healthcare services.

Arab nations like Iraq are also experiencing an increase in older adults due to improvements in healthcare and efforts to eradicate infectious diseases (Mohsen Al-Gimavi et al., 2023). These demographic shifts will have extensive consequences for all societal sectors, particularly healthcare. For example, they are expected to increase the prevalence of age-related chronic conditions such as cardiovascular disease, dementia, and stroke, as well as place greater financial and workforce pressures on health systems. Consequently, promoting comprehensive healthcare programs for older adults is crucial, as they will form a significant portion of the population in developing countries in the coming years (Habibi et al., 2012; Mohsen Al-Gimavi et al., 2023).

Globally, approximately 80% of older adults suffer from at least one chronic disease, with treatment costs being 20 to 30 times higher than those for acute illnesses (Atella et al., 2019; Ruthsatz & Candeias, 2020). Stroke, the third leading cause of mortality worldwide after cardiovascular diseases (CVDs) and cancer, is the most common health condition associated with aging (Fekri et al., 2021; Nikookar et al., 2015). It is a major cause of disabilities and disease burden globally (Johnson et al., 2019). Stroke survivors require long-term healthcare services, making informal caregivers essential in providing care (Dehkordi et al., 2020). However, caregiving can be a challenging task, especially for untrained informal caregivers handling life-threatening conditions. This often leads to caregiver burden (CB) and associated stress (Kazemi et al., 2021; Rohani et al., 2015).

CB is a multidimensional response to physical, psychological, emotional, social, and financial stressors, often resulting in chronic stress and health risks for caregivers (Khatti Dizabadi et al., 2013; Plöthner et al., 2019). Informal caregivers are sometimes referred to as “hidden patients” because they often neglect their own healthcare needs due to the physical, emotional, and time-related demands of caregiving (Agyemang-Duah & Rosenberg, 2023, 2024; Farhadi et al., 2016; Kim et al., 2024; Shaffer & Nightingale, 2020). Previous research has shown that family members caring for stroke patients frequently experience poor health conditions (Barutcu, 2019; Kumar et al., 2015). CB may be exacerbated by poor health literacy (HL), particularly concerning the caregiver’s responsibilities. Enhancing HL among informal caregivers can be beneficial for both caregivers and care recipients (Barutcu, 2019).

HL is defined as a set of personal characteristics and social resources that enable individuals to access, understand, and use information to make informed health decisions (Haresabadi et al., 2012). Individuals with poor HL often have lower health status, misunderstand health information, and seek medical help only when problems become severe (Mourad et al., 2014; Samadbeik et al., 2015). In elderly stroke survivors, sensory and perceptual changes can further impair HL, highlighting the need for better HL among their caregivers.

Previous studies have attempted to explore aspects of caregiver burden or health literacy separately. For instance, Ain et al. (2014) found that low HL was significantly associated with increased psychological stress among caregivers of chronically ill patients (Ain et al., 2014). Similarly, Al-Harbi et al. (2020) investigated caregiver burden among stroke caregivers in Saudi Arabia and emphasized the need for psychosocial support (Al-Harbi et al., 2020). However, few studies have directly examined the relationship between CB and HL in the context of older stroke survivors. Moreover, cross-national comparative studies—particularly between culturally similar yet socioeconomically distinct nations like Iran and Iraq—are scarce. This study addresses this gap by comparing the relationship between CB and HL among informal caregivers in both countries.

Furthermore, this study has potential implications for global and national health frameworks. By identifying modifiable factors such as HL that affect caregiver burden, the findings may contribute to achieving Sustainable Development Goal 3 (Good Health and Wellbeing), which emphasizes improving health for all at all ages. Additionally, the results could inform national policies in Iran and Iraq aimed at supporting informal caregivers and improving care for older stroke survivors.

Given the increasing elderly population in neighboring countries Iran and Iraq, both sharing similar official religions in the Middle East, this study aims to compare CB among informal caregivers of elderly stroke patients and explore its relationship with HL in these two countries.

Methods

Setting and Study Design

This descriptive-analytic study with a cross-sectional design was conducted from February to December 2021.

Participants

The participants were informal caregivers of elderly stroke survivors in Iran and Iraq. Inclusion criteria were: caregivers aged 18 and over, confirmed stroke diagnosis of the care recipient, informed consent, residence in Iraq or Iran for at least 1 year, primary responsibility for the elderly care recipient for at least 1 month, no other caregiving responsibilities, and no payment for caregiving services. Exclusion criteria included unwillingness to participate at any stage, incomplete questionnaires, and caring for patients with other chronic debilitating conditions (such as advanced dementia, Parkinson’s disease, or ALS) that might impose significantly different types of caregiver burden compared to stroke.

Sample Size

The sample size was determined using the correlation formula for two quantitative variables. Based on the correlation between caregiver burden (CB) and health literacy (HL) reported as r = .3 by Barutcu (2019), the required sample size was estimated to be 133 individuals. However, to account for potential sample loss, 150 participants from each country were recruited.

Outcomes

The primary research tools were two questionnaires: the Health Literacy Instrument for Adults (HELIA) and the Caregiver Burden Inventory (CBI). These were first translated into Arabic for Iraqi caregivers. The translation process involved translating from Persian to Arabic by two native Arabic speakers fluent in Persian, followed by back-translation by two Persian language experts. The translations were reviewed and finalized after being piloted with 20 older adults, incorporating their feedback.

Completing the 33-item HELIA took 33 min in person and at least 50 min online. The 24-item CBI required 24 min in person and 40 min online. HELIA, developed by Montazeri et al. (2014), had its construct validity confirmed by exploratory factor analysis (EFA) and reliability measured by internal correlation coefficients (Cronbach’s alpha: .72–.89). The CBI, translated and psychometrically validated by Shafizadeh et al. in Iran, showed a Cronbach’s alpha of .93 and an intra-class correlation coefficient (ICC) of .96, indicating high reliability (Shafiezadeh et al., 2019). Javadzade et al. also reported a Cronbach’s alpha of .90 for the CBI and .72 to .82 for its subscales (Javadzade et al., 2012).

A demographic information form was used to collect data on caregivers (age, gender, kinship with the elderly, occupation, and education) and older adults (age, gender, and illness duration). The selection of these variables was informed by existing literature on factors potentially influencing caregiving outcomes and the health status of older adults. Previous studies have identified demographic characteristics such as caregiver–care recipient relationship, caregiver’s educational level, and care recipient’s illness duration as relevant predictors of caregiving stress, burden, and the effectiveness of educational interventions. All demographic variables were measured through direct, structured questions in the demographic form.

Data Collection

Researchers and assistants visited Ghaem Hospital in Mashhad, Iran, and eight neurology offices, as well as the only neurology clinic with 32 beds affiliated with Al-Sadr Hospital in Najaf, Iraq. Participants were selected using convenience sampling from those attending the neurology clinic or based on patient records. In Iraq, after explaining the research objectives and obtaining informed consent, data were collected, and questionnaires were completed in person. Due to the COVID-19 outbreak and the closure of specialist clinics in Iran, questionnaires were administered online. Researchers obtained phone numbers of informal caregivers of recently discharged elderly stroke patients after receiving permission from the hospital’s security department. Caregivers were contacted, and with their consent, questionnaires were sent electronically via WhatsApp. Informal caregivers received small gifts as a token of appreciation, and their questions about healthcare services and stroke rehabilitation were addressed.

In Iraq, the research team also visited neurology offices and the neurology clinic at Al-Sadr Hospital, selecting participants through convenience sampling.

Data Analysis

Data were imported into SPSS Statistics software (Version 22) and analyzed using both descriptive and inferential statistics. Descriptive statistics (means, standard deviations, frequencies, and percentages) were calculated to summarize demographic characteristics of the participants in both countries.

To assess differences between Iranian and Iraqi informal caregivers regarding demographic characteristics, health literacy, and caregiver burden, independent-samples t-tests and one-way analysis of variance (ANOVA) were performed.

Moreover, a multiple linear regression analysis was conducted to examine the relationship between caregiver burden (as the dependent variable) and key predictors including caregivers’ health literacy, their age, and the age of the older adult receiving care. The regression model was tested for assumptions such as multicollinearity and normality of residuals. The level of statistical significance was set at p < .05. The results were reported using unstandardized coefficients (B), standard errors (SE), standardized beta coefficients (β), t-values, and p-values.

Results

The study included 300 participants in total, divided equally between Iran and Iraq. The mean age of the informal caregivers was 58.42 ± 9.88 years in Iran and 52.36 ± 6.99 years in Iraq, with an age range of 19 to 74 years. The mean age of the older adults was 73.67 ± 10.71 years in Iran and 71.67 ± 9.01 years in Iraq. There was a significant difference in the mean age of caregivers between the two countries (p < .01), while the difference in the mean age of older adults was not statistically significant (p = .088). Various demographic characteristics such as gender of the older adults and caregivers, educational attainment, marital status, place of residence, occupation, type of employment, income level, familial relationship to the care recipient, and the presence of chronic diseases among caregivers were also compared between the two groups (Table 1).

Table 1.

Distribution of Demographic Characteristics Among Informal Caregivers of Older Adults with Stroke in Iran and Iraq.

Variables	Group		p
	Iran	Iraq
	N = 150	N = 150
Age of informal caregivers (years) (Mean ± SD)	58.42 ± 9.88	52.36 ± 6.99	<.01
Age of older adults (years) (Mean ± SD)	73.67 ± 10.71	71.67 ± 9.01	.088
Gender of informal caregivers, n (%)
Female	81 (45)	99 (66)	<.001
Male	69 (46)	51 (34)	<.001
Age of older adult by gender, n (%)
Female	77 (48.7)	41 (27.3)	<.001
Male	73 (51.3)	109 (72.7)	<.001
Education status of caregivers, n (%)
Below diploma	74 (49.4)	94 (62.7)	<.001
Diploma	65 (43.3)	27 (18)
University degree	11 (7.3)	29 (19.3)
Marital status of caregivers, n (%)
Never married	38 (25.3)	22 (14.7)	<.001
Married	78 (52)	103 (68.7)
Divorced	22 (14.7)	23 (15.3)
Widow/widower	12 (8)	2 (1.3)
Income level of caregivers, n (%)
Low	39 (26)	26 (17.3)	<.05
Medium	75 (50)	97 (64.7)
High	36 (24)	27 (18)
Familial relationship to care recipient, n (%)
Spouse	73 (48.7)	105 (71)	<.0001
Child	13 (8.7)	22 (14.7)
Others	37 (24.7)	23 (15.3)
Presence of chronic disease in caregivers, n (%)
Yes	16 (10.7)	24 (16)	.286
No	134 (89.3)	126 (84)	.286

The mean HL score of informal caregivers in Iraq was 64.77 ± 17.24, and in Iran was 70.44 ± 15.69. The difference between the two groups was statistically significant (p < .01). The HL score was significantly lower in Iraq compared to Iran (p = .001). Additionally, the mean CB score for informal caregivers of elderly stroke survivors was 30.48 ± 9.09 in Iraq and 37.60 ± 16.72 in Iran. The CB score was significantly higher in Iran than in Iraq (p = .000; Table 2).

Table 2.

The Mean Scores of Health Literacy and Caregiver Burden Among Older Adults with Stroke in Iran and Iraq.

Variables	Group		p
Variables	Iran	Iraq	p
Health Literacy (Mean ± SD)	71.22 ± 15.18	64.77 ± 17.24	<.001
Caregiver burden (Mean ± SD)	37.60 ± 16.72	30.48 ± 9.09	<.001^a

Independent t-tests were used for statistical analysis.

Multivariable linear regression analysis revealed that caregiver burden was associated with factors such as caregiver’s age, gender, educational attainment, income, kinship with the elderly, and occupation. Furthermore, the analysis showed that CB was significantly related to HL, caregiver’s age, and the age of the older adult. HL, caregiver’s age, and the age of the older adult accounted for 15% of the variance in CB. Specifically, CB increased with the age of the older adult (β = .249) and the caregiver’s age (β = .226). Conversely, a decrease in HL (β = −.261) was associated with an increase in CB (Table 3).

Table 3.

The Relationship Between Factors Related to Caregiver Burden Based on Multiple Linear Model.

Variables	B	SE	Beta	T	p
Intercept	25.403	6.44		3.94	<.001
Health literacy	−0.261	0.045	−0.314	−5.769	<.0001
Age of caregivers	0.226	0.069	0.178	3.261	<.001
Age of older adults	0.249	0.074	0.183	3.359	<.001

Discussion

The study found that the mean CB score of informal caregivers of elderly stroke survivors in Iran was higher than that in Iraq. Iranian caregivers experienced a moderate-to-high level of CB, whereas Iraqi caregivers had a mean CB score below the average. These findings align with previous research conducted in Iran, such as studies by Shafizadeh et al. in Tehran and Saadati et al. in Gonabad (Sangsefidi et al., 2020). Similarly, Salehi et al. reported that nearly half of informal caregivers of Alzheimer’s patients experienced moderate-to-high CB (Salehi et al., 2020). Bagherbeig Tabrizi et al. also found moderate-to-high CB among informal caregivers of the elderly (Bagheri et al., 2019).

The lower CB levels in Iraqi caregivers compared to their Iranian counterparts may be attributed to differences in demographic and sociocultural factors, such as the younger mean age of Iraqi caregivers and the significant number who were spouses of older adults. This could be due to the polygamous culture and extended family structure in Iraq. These factors may partly explain the study results.

Additionally, HL score was higher among Iranian caregivers compared to Iraqi ones. Given the higher prevalence of chronic diseases, including stroke, and the subsequent self-care and rehabilitation needs, promoting HL among caregivers is crucial. Previous studies have shown that HL directly impacts these factors (Shfiezadeh et al., 2020). In Iran, government support, specialized training centers for stroke patients, and high healthcare costs in private centers make home care by family caregivers common (Mardom et al., 2021). Iran has a program to support informal caregivers, offering systematic training-based interventions focused on disease knowledge, adaptation, communication, and problem-solving skills (Dalvandi et al., 2011). These trainings likely contribute to higher HL among Iranian caregivers. Unfortunately, comparable studies in Iraq are lacking, highlighting the need for increased attention and interventions to improve HL among caregivers in that country.

Comparing Iran and Iraq, factors such as caregiver income, occupation, place of living, caregiver-patient ratio, and the marital status and income of patients influenced CB and HL. Both countries have similar economic and sociocultural conditions, and CB was higher among women in both nations. Women are often the primary caregivers in these traditional societies. The highest CB was on the shoulders of spouses, who were often older themselves, increasing their risk of physical and mental health issues. Caregiving in Iran and Iraq is typically a family-centered duty, with spouses or children often serving as caregivers (Farhadi et al., 2016; TariMoradi & Ahadi, 2014).

Iranian caregivers generally had higher educational attainment than their Iraqi counterparts, which likely contributed to their lower CB. Higher education levels correlate with better access to information and self-care skills, reducing CB. Although no significant relationship was found between the economic status of the elderly and CB, improved economic status could reduce CB. These findings are consistent with those of Tajweedi (Tavousi et al., 2016). However, some studies did not find these variables impacting CB (Gorgulu et al., 2016; Karahan et al., 2014; Tel et al., 2012).

Education and income levels were lower among older adults, and women had poorer HL (Darvishpour et al., 2016; Fadaiyan Arani et al., 2017). The HL mean score increased with higher education attainment among caregivers. Non-print media, such as pictures and videotapes, or interactive computer programs effectively conveyed health messages to those with lower education (Darvishpour et al., 2016). Caregivers who could read preferred non-written materials, such as picture books, videos, or multimedia shows (Shfiezadeh et al., 2020). Identifying the needs of informal caregivers and implementing support interventions based on these needs are the best solutions. Although many studies have addressed the challenges faced by caregivers of patients with chronic diseases, limited research has specifically focused on improving their health literacy (Javadzade et al., 2012; Kooshyar et al., 2014; Tavousi et al., 2016).

The study also found that CB was associated with HL, caregiver age, and older adult age. These variables could predict 15% of the changes in CB. CB increased with the age of both the elderly and the caregiver, and poor HL intensified CB. Della Pelle et al. (2018) found that older caregivers had lower HL levels.

The inverse relationship between CB and HL among caregivers of elderly stroke survivors in both countries suggests that higher HL levels correlate with lower CB, and vice versa. Despite limited information on HL and CB in Iran and Iraq, these findings are consistent with other studies, such as Barutcu et al., which observed a negative and moderate relationship between HL and CB (Barutcu, 2019). Increasing HL in caregivers can reduce their CB.

However, several limitations must be considered when interpreting these findings. First, the level of caregiver burden can vary significantly across different chronic debilitating diseases (e.g., dementia of various origins, Alzheimer’s, Parkinson’s, ALS). Therefore, caution is advised when generalizing these results to caregivers of patients with conditions other than stroke, as the nature of the burden may differ. Second, this study did not measure the number of individuals involved in the care process. Stroke patients, particularly those with higher BMI or severe disability, often require more than one caregiver, and the presence of a support network could significantly influence the reported burden. Third, the study did not account for the average duration of caregiving among the participants, which is a factor that could affect the intensity of the burden over time. Finally, other limitations include the potential influence of participants’ mental and emotional conditions during questionnaire completion and the restriction of the study to specific cities, which limits generalizability. Additionally, the cross-sectional design restricts the ability to infer causal relationships between caregiver burden and health literacy. Furthermore, the study population was primarily recruited from urban hospitals and clinics; therefore, the results may not fully represent the health literacy and caregiver burden of rural populations.

Despite these limitations, the study has several strengths. It provides valuable empirical evidence on the relationship between caregiver burden and health literacy in two culturally similar but politically distinct countries in the Middle East. Methodologically, the study benefits from a comparative design and the use of validated instruments across two populations, contributing to the cross-cultural understanding of caregiving dynamics and health literacy in low- and middle-income countries.

Implications for Policy, Practice, and Future Research

The findings of this study have important implications for health policy, clinical practice, and future research in both Iran and Iraq. From a policy perspective, the demonstrated association between health literacy (HL) and caregiver burden (CB) underscores the urgent need for national health systems to formally recognize and support informal caregivers as integral contributors to patient care. National policies should prioritize the development and implementation of structured caregiver support programs, including targeted HL training, psychological support services, and financial subsidies, particularly in Iraq where such initiatives are scarce.

In terms of clinical practice, healthcare providers should routinely assess the HL levels of informal caregivers and offer tailored educational interventions designed to enhance their understanding of stroke management, caregiving strategies, and available healthcare resources. Integrating HL-focused modules into caregiver training programs can help reduce CB, improve patient outcomes, and enhance the well-being of caregivers.

Regarding sustainable development, this study contributes to the realization of Sustainable Development Goal 3 (SDG 3), which aims to ensure healthy lives and promote well-being for all at all ages. By addressing caregiver burden and HL, the findings support SDG 3’s target of achieving universal health coverage and access to quality essential healthcare services. Empowering caregivers improves health outcomes for elderly stroke survivors, reduces healthcare system strain, and promotes community health resilience.

For future research, longitudinal studies are recommended to explore causal relationships between HL and CB and to evaluate the long-term impact of HL interventions on caregiver well-being and patient outcomes. Furthermore, qualitative research is needed to gain deeper insights into the lived experiences of caregivers in both countries. Expanding this research to other chronic disease contexts and broader geographic regions can also inform regional and international health policy initiatives.

Conclusion

This study demonstrated a relationship between HL and CB among informal caregivers of elderly stroke patients in Iran and Iraq. Lower HL can make managing healthcare services more challenging for caregivers. To improve HL, approaches such as simplifying information, using clear educational materials, adopting effective communication strategies, and involving health education experts are recommended. The findings also highlighted the importance of considering demographic variables such as caregiver age, gender, income, educational attainment, occupation, and the caregiver-patient ratio in addressing CB. Health officials should focus on enhancing HL in caregivers, especially at a younger age, as future older adults.

Footnotes

Acknowledgements

We express our gratitude to the caregivers who willingly participated in this study. Additionally, we extend our appreciation to the Vice Chancellors for Research of Medical Ghaem Hospital in the city of Mashhad, Iran, and Al-Sadr Hospital in the city of Najaf, Iraq, for their valuable cooperation.

ORCID iDs

Najmeh Valizadeh Zare

Mohammad Namazinia

Ethical Considerations

This study was approved by the Ethics Committee of Mashhad University of Medical Sciences (IR.MUMS.NURSE.REC.1400.030). All procedures were performed in accordance with the ethical standards of the Declaration of Helsinki and relevant institutional guidelines and regulations.

Consent to participate

Written informed consent was obtained from all participants who met the inclusion criteria. The purpose and importance of the study were fully explained to the subjects before they signed the consent form.

Consent for publication

Not applicable.

Author’s Contributions

All authors have read and approved the manuscript. Study design: NVZ, HMA, AGM; data collection and analysis: MA, HMA; manuscript preparation: MN, TS.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by a grant from Mashhad University of Medical Sciences.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The datasets generated in the current study are available from the corresponding author upon reasonable request.

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