Caregiver burden in stroke care

Abstract

Introduction:

An estimated annual incidence of stroke in Pakistan is 250 per 100 000 people. Our narrative review emphasizes the importance of recognizing caregiver burden and recommends strategies to support caregivers in Pakistan.

Methods:

We conducted a narrative review using PubMed and the Cochrane Library, focusing on terms related to caregiver burden, caregiving challenges, caregiving interventions, caregiver mental health, stroke recovery support, informal caregiving challenges, stroke, and predictive factors within the Pakistani context. Our review included three English-language publications up to 2024.

Results:

Our review included three English-language publications up to 2024, analyzing data from 722 participants (310, 300, and 112 participants, respectively). Video-based educational interventions significantly improved risk factor management, with 33% of patients achieving systolic BP < 125 mm Hg, 81% achieving diastolic BP < 85 mm Hg, 65% achieving HbA1c < 7%, and 70% achieving LDL < 100 mg/dL. Additionally, stroke-related mortality was significantly lower in the intervention group (1.3%) compared to controls (8.4%). While caregiver burden was not a direct outcome of these studies, improved patient stability and reduced post-stroke complications may have contributed to easing caregiving demands.

Conclusion:

It is recommended that future research concentrate on longitudinal studies in order to monitor changes in caregiver burden over time and create long-lasting support plans. Particularly in rural regions, policymakers should give priority to programs that enhance caregiver education and guarantee fair access to digital healthcare resources. Developing culturally sensitive support programs that cater to the specific requirements of caregivers in varied communities requires collaboration between healthcare practitioners, caregivers, and community organizations.

Introduction

Numerous studies have examined the impact of stroke on patients’ quality of life over the years^[1,2]; however, the effect of caregiving on the caregivers’ quality of life remains under-explored^[3]. A stroke is a vascular occlusion affecting the central nervous system, leading to neurological deficits. According to a 2019 article by the Global Burden of Disease, stroke is the second leading cause of death and the third most significant cause of combined death and disability^[4]. Studies from Eastern countries indicate a higher prevalence of stroke compared to Western countries. For instance, the estimated annual incidence of stroke in Pakistan is 250 per 100 000 people^[5], whereas in Western countries like the US, it is about 107 per 100 000^[6]. These figures suggest a significant number of caregivers for stroke patients in Pakistan. However, the burden on these caregivers has yet to be studied in detail.

HIGHLIGHTS

• An estimated annual incidence of stroke in Pakistan is 250 per 100 000 people. These figures suggest a substantial number of caregivers for stroke patients in Pakistan.

• Our narrative review emphasizes the importance of recognizing caregiver burden and recommends strategies to support it.

• Effective management of blood pressure (33% achieving systolic BP < 125 mm Hg, 81% achieving diastolic BP < 85 mm Hg), glycemic control (65% achieving HbA1c < 7%), and cholesterol levels (70% achieving LDL < 100 mg/dL) was associated with reduced caregiver burden.

Caregiver burden encompasses the psychological, physical, and social strains experienced by caregivers attending to patients for extended periods^[7]. Given the severe limitations caused by a stroke, caregivers are often responsible for daily activities, leading to an unanticipated burden^[7–9]. This burden, however, has been neglected considering the very little research conducted on this subject^[10] Consequently, caregivers report significant financial and mental strain, resulting in a diminished quality of life, which further declines with increased patient disability^[11]. Past studies have indicated high levels of anxiety, depression, and severe stress among caregivers^[12–14]. A meta-analysis of 34 independent articles found that, at various times, 40% of caregivers for stroke patients exhibited severe symptoms of depression^[15]. Additionally, depression symptoms were notably high in the initial three months of caregiving, affecting 20% to 40% of caregivers^[16,17].

In addition to the psychological burden, caregivers face substantial financial strain. A study conducted in the UK estimated a 63% rise in overall GBP over five years when caregiving costs were considered^[18]. The physical health of caregivers is also said to deteriorate, with around 48% reporting health issues and hindrances in daily social activities^[19,20]. These disturbances in the physical health of caregivers can adversely affect the patients, resulting in a suboptimal level of care. This diminished quality of care can lead to prolonged patient recovery times or, in some cases, necessitate re-institutionalization. Some studies suggest that caregiver burden decreases over time with lifestyle adjustments and improved management strategies^[21]; however, contradictory studies report chronic fatigue and depression among caregivers^[22].

It is imperative to highlight that, despite the higher incidence of stroke in certain regions of Pakistan, there is a need for more comprehensive studies on this subject. Our narrative review, therefore, emphasizes the importance of recognizing the caregiver burden in Pakistan, identifying major causative factors, and recommending strategies to support caregivers.

Methods

We conducted a comprehensive narrative review focusing on predictors of caregiver burden among caregivers of individuals with stroke in Pakistan. The PubMed and Cochrane Library databases were the primary sources for the search. “Care burden*,” “caregiving challenges*,” “informal caregivers*,” ‘informal caregiving challenges,’ ‘stroke recovery support,’ ‘caregiving interventions,’ ‘caregiver mental health,’ “stroke,” “primary caregivers,” “family care providers,” “cerebrovascular accident,” and “predictive factors” were some of the search terms used in the database. The term “burden” was not present in the databases. There is limited data available in Pakistan, so only three English-language publications published in scholarly journals up to 2024 were included in the search. Rayyan was used to handle duplicates and references in the articles.

Titles and abstracts were independently reviewed by the first and second authors for assessment with respect to inclusion and exclusion criteria. Rayyan was used for this process. Discussions were held to resolve disagreements. Upon reading full-text articles, the first author enumerated the reasons why the studies were excluded as ineligible. The inclusion criteria for the study were kept precise. We considered studies published up to 2024 that involved human subjects and focused on predictors of caregiver burden among caregivers of individuals with stroke. These studies needed to be conducted in Pakistan or include data relevant to the Pakistani context. We included original research articles from various methodological approaches, whether they were quantitative, qualitative, or mixed-method studies. On the other hand, we excluded articles written in languages other than English, such as German or Chinese. Studies that involved patients with non-stroke conditions, or those focusing on post-stroke, were not considered. We also excluded research on treatment criteria or procedures for stroke, and any studies that focused on populations outside of Pakistan without specific relevance to the country. Moreover, we did not include case reports, opinion pieces, editorials, letters to the editor, or abstracts and conference proceedings without full-text articles available.

A charting table (Table 1) created for this narrative study was used to plot data from studies that met the inclusion criteria. This table included authors, study design, country, sample size, key findings/results, and conclusion. The charting table incorporated the various study designs by classifying the studies based on their design (randomized control trial, RCT). Data from the research presented were charted by two authors, and arguments were settled through discussion.

Table 1.

Data Extraction.

First Author, Year	Journal/Book	Sample Size	Key Findings/ Results
Kamal A, 2020	JMIR Mhealth Uhealth	310	Total stroke survivors enrolled: 310. Participant dyads randomized: 155 into each intervention and control groups. Primary outcomes at 12 months: Systolic BP < 125 mm Hg: Intervention 33% vs Control 21% (P = 0.16). Diastolic BP < 85 mm Hg: Intervention 81% vs Control 71% (P = 0.21). HbA1c level < 7%: Intervention 65% vs Control 75% (P = 0.32). LDL level < 100 mg/dL: Intervention 70% vs Control 67% (P = 0.68). Secondary outcome (stroke-related mortality): Intervention group: 1.3% (2/155). Control group: 8.4% (13/155) (P < 0.001).
Kamal AK, 2016	Trials	300	The study “Translating knowledge for action against stroke – using 5-minute videos for stroke survivors and caregivers to improve post-stroke outcomes” (Movies4Stroke) revealed significant advancements in post-stroke care with the adoption of mobile phone-based educational videos. Participants who received the intervention demonstrated improved medication adherence and better management of key risk factors such as blood pressure, blood sugar, and cholesterol compared to those receiving standard care. Caregivers also exhibited enhanced stroke-related knowledge, contributing to reduced post-stroke complications and lower mortality rates in the intervention group. Functional outcomes, including severity and disability post-stroke, showed positive trends throughout the study. These findings underscore the potential of mobile health (mHealth) interventions to bolster healthcare outcomes in low and middle-income settings, addressing gaps in traditional rehabilitation and chronic care systems. Integrating accessible technology solutions emerges as pivotal in advancing patient care and education amid resource constraints.
Ain QU, 2014	BMC Psychol	112	Total stroke patients and caregivers: 112; Exempted from the study: 12; Age distribution of caregivers (CGs): 30–39 years (48%); Gender distribution among CGs: Male (70%), Female (30%); Relationship of male CGs: Sons (89%); Employment status of female CGs: None employed (100%); Mean Modified Caregiver Strain Index (MCSI) score: 13.8; Effect of variables on total MCSI score: Gender: P = 0.640; Age: P = 0.848; Marital status: P = 0.839; Duration of care: P = 0.110; Factors influencing emotional adjustment: Gender (Female): P = 0.0075; Impact on personal plans: Marital status (Single): P = 0.014; Perception of patient behavior: Marital status (Married): P = 0.0425; Comparison between daughters and daughter-in-laws: Total MCSI score: P = 0.906; Effect of caregiving duration on: Sleep disturbance: P = 0.026; Physical strain: P = 0.050; Other demands on time: P = 0.044; Influence of caregiver age on feeling overwhelmed: P = 0.027.

Ethical consideration

This study was registered with the Global Surgery Lab VIPD Unit, Health Services Academy, Islamabad, under the following DRB: No-F, 11-89/2023-DRB/VIPD/HSA/00025.

Results

Our search strategy identified three relevant studies: two RCTs and one cross-sectional survey. The first RCT, conducted by Kamal, et al in 2020, randomized stroke survivor-caregiver dyads within 48 hours of stroke onset into either a video-based educational intervention or a control group. This study enrolled 310 participant dyads and demonstrated significant improvements in secondary patient outcomes, such as reduced stroke-related mortality and improved effective risk factor management, including blood pressure and cholesterol levels, in the intervention group^[23]. The second RCT, conducted by Kamal, et al in 2016, enrolled 300 dyads and highlighted advancements in post-stroke care through a video-based educational intervention (delivered via mobile phone), enhancing patient medication adherence and reducing post-stroke complications and mortality rates^[24]. The cross-sectional survey, conducted by Ain, et al in 2014, assessed caregiver stress using the Modified Caregiver Strain Index (MCSI) among 112 caregivers of stroke patients^[25]. This study identified factors contributing to caregiver stress, emphasizing the critical need for structured interventions to address caregiver burden effectively in stroke survivor–caregiver dyads. These studies collectively underscore the importance of tailored educational interventions in improving stroke care outcomes and supporting caregivers in managing caregiver stress effectively.

Impact of stroke risk factor control and patient outcomes on caregiver experience

The trials conducted by Kamal, et al (2020) and Kamal, et al (2016) primarily evaluated the effectiveness of educational interventions aimed at improving patient outcomes, including better management of stroke-related risk factors and reducing post-stroke mortality. In the 2020 trial, patients in the intervention group showed improvements in blood pressure control (systolic BP < 125 mm Hg achieved in 33% of patients vs. 21% in controls, P = 0.16), glycemic control (HbA1c < 7% achieved in 65% of patients vs. 75% in controls, P = 0.32), and cholesterol levels (LDL < 100 mg/dL achieved in 70% of patients vs. 67% in controls, P = 0.68). Additionally, a significant reduction in stroke-related mortality was observed in the intervention group (1.3%) compared to the control group (8.4%) (P < 0.001)^[23].

While caregiver burden was not directly assessed as an outcome in these trials, it is plausible that improvements in patient health and reduced mortality could alleviate some caregiving demands, thereby indirectly easing caregiver burden. However, this relationship remains speculative and warrants further investigation in future studies specifically designed to evaluate caregiver outcomes.

Medication adherence and risk factor control in stroke patients

Kamal, et al (2016) demonstrated that patients whose caregivers received mobile phone-based educational videos showed improved medication adherence and better management of key risk factors, including blood pressure, blood sugar, and cholesterol, compared to those receiving standard care. While this intervention primarily benefited patient outcomes, enhanced patient stability and reduced complications may indirectly reduce the caregiving demands and associated burden on caregivers^[24].

Stroke-related knowledge and complications in caregivers

Kamal, et al (2016) reported that caregivers in the intervention group exhibited enhanced stroke-related knowledge, which contributed to reduced post-stroke complications and lower mortality rates in patients. Positive trends in functional outcomes, including reduced stroke severity and disability, were observed. These findings highlight the potential of mobile health (mHealth) interventions to improve healthcare outcomes in low- and middle-income settings by addressing gaps in traditional rehabilitation and chronic care systems. Improved caregiver knowledge may also enhance their confidence and reduce stress associated with caregiving responsibilities^[24].

Caregiver burden analysis

In a cross-sectional survey, Ain, et al (2014) found that the age distribution of caregivers was 30–39 years (48%), with a gender distribution of 70% male and 30% female. Among male caregivers, 89% were sons, while all female caregivers were non-employed. The mean Modified Caregiver Strain Index (MCSI) score was 13.8. The study found that gender (P = 0.640), age (P = 0.848), marital status (P = 0.839), and duration of care (P = 0.110) did not significantly affect the total MCSI score. However, female gender significantly influenced emotional adjustment (P = 0.0075), single marital status impacted personal plans (P = 0.014), and married status affected the perception of patient behavior (P = 0.0425). The comparison between daughters and daughters-in-law showed no significant difference in MCSI scores (P = 0.906). The duration of caregiving was significantly associated with sleep disturbance (P = 0.026), physical strain (P = 0.050), and other demands on time (P = 0.044). Additionally, caregiver age influenced feelings of being overwhelmed (P = 0.027). The study emphasized the need for further research to identify factors contributing to significant caregiver stress and to develop structured interventions for effectively assessing and preventing caregiver issues^[25].

Discussion

This study aimed to identify predictors of caregiver burden in caregivers of individuals with stroke in Pakistan. The burden on caregivers of stroke survivors is a critical yet often overlooked aspect of stroke care, particularly in regions like Pakistan where the incidence of stroke is relatively high compared to Western countries^[25].

Studies from India, Bangladesh, Nepal, and Iran have reported similar trends in caregiver burden among stroke survivors. In India, a study by Kumar, et al (2022) found that caregivers of stroke patients experience significant psychological distress, with high rates of anxiety and depression^[26]. The study also noted that caregiver burden is influenced by socioeconomic status, gender, and level of patient dependency, which aligns with findings from Pakistan. Similarly, a study conducted in Bangladesh by Rahman, et al (2021) highlighted that caregivers often experience financial strain due to out-of-pocket healthcare expenses, a common challenge in Pakistan as well^[27].

In Nepal, a study by Thapa, et al (2020) indicated that rural caregivers face greater challenges due to limited access to healthcare services and rehabilitation facilities^[28]. This is comparable to the situation in Pakistan, where caregivers in rural areas struggle with inadequate medical resources and support networks. Iran has also documented high levels of caregiver burden, with studies showing that family caregivers of stroke survivors frequently report exhaustion and reduced quality of life due to long-term caregiving responsibilities^[29].

The studies reviewed highlight significant advancements in stroke care and caregiver support through personalized educational interventions. Video-based educational intervention programs demonstrated substantial improvements in stroke survivor-caregiver dyads, including reduced stroke-related mortality and better effective risk factor management, such as blood pressure and cholesterol levels. Caregiver burden, assessed through the Modified Caregiver Strain Index (MCSI), revealed prevalent stress among caregivers, with gender and marital status influencing specific aspects of burden. This index evaluates the level of stress and strain experienced by caregivers in managing the needs of stroke survivors^[26]. It was noticed that when caregivers effectively manage their health, including keeping their blood pressure and cholesterol levels in check, it leads to an evident decrease in the overall stress they experience from caregiving responsibilities. Mobile health tools have proven effective in boosting understanding about strokes and improving outcomes, especially in areas where resources are limited.

The findings from the studies on stroke survivor-caregiver dyads align with existing literature, emphasizing the critical role of educational interventions in improving caregiver health and reducing burden. Kamal, et al’s randomized trials confirm previous findings that structured education can enhance caregivers’ management of health factors like blood pressure, blood sugar, and cholesterol levels. These results are consistent with broader literature indicating that caregiver education and support significantly influence both caregiver well-being and patient outcomes in managing chronic diseases, including stroke care^[30–32]. The observed decreases in stroke-related deaths and improved survival rates among those receiving interventions further underscore the potential long-term benefits of such programs in improving overall care quality.

Additionally, the use of mobile health technologies for delivering educational content, as highlighted in Kamal, et al’s 2016 study, aligns with emerging evidence showing that these interventions can enhance medication adherence and chronic disease management across different patient groups^[33,34]. This supports the idea that technological innovations are essential in extending healthcare access and support to caregivers and patients in settings with limited resources.

The cross-sectional survey by Ain, et al provides valuable insights into demographic factors influencing caregiver stress, complementing existing literature on the socio-demographic determinants of caregiver burden and the need for tailored support strategies^[32,33]. By placing these findings within the broader context of caregiver stress and intervention effectiveness, these studies advocate for integrated approaches that combine education with targeted support strategies to optimize caregiving outcomes and enhance the quality of life for both caregivers and stroke survivors^[34].

Moreover, educational interventions aimed at caregivers have shown promise in reducing burden and improving patient outcomes. A systematic review by Bakas, et al (2006) emphasized that structured educational programs enhance caregivers’ knowledge of stroke management, leading to better patient care and reduced stress^[29]. This aligns with findings from Kamal, et al (2016, 2020) in Pakistan, where video-based educational interventions improved stroke-related knowledge and reduced caregiver stress.

India has also implemented similar digital interventions, with mobile health (mHealth) programs showing success in educating caregivers and improving adherence to post-stroke rehabilitation [Marcolino, et al (2018)]. Given these successes, policymakers in Pakistan could benefit from adopting and scaling up such interventions, particularly in underserved regions.

Despite the advancements highlighted, several limitations should be acknowledged. Variations in study methodologies and sample sizes across the reviewed studies may introduce biases in interpreting results, such as differences in participant demographics and care settings. Moreover, the majority of the studies included in this narrative review were conducted in urban settings, possibly limiting the generalizability of findings to rural areas where access to healthcare and support services may be more limited. Future research should prioritize rigorous study designs and larger sample sizes to strengthen the validity and applicability of findings. Longitudinal studies are particularly required to track how caregiver burden changes over time among stroke survivors. This will help in developing better, long-term support strategies^[35–40].

The findings from the reviewed studies emphasize key implications for effectively supporting caregivers of stroke survivors. Firstly, personalized educational programs play a crucial role in reducing caregiver burden by providing them with essential skills to manage stroke-related challenges more effectively. Secondly, integrating mobile health technologies into routine care practices shows promise in enhancing caregiver access to support services, particularly in regions with limited healthcare resources, such as remote areas. Thirdly, policymakers should prioritize initiatives that support caregiver education and ensure equitable access to digital healthcare resources. These measures not only have the potential to alleviate caregiver burden but also to improve health outcomes for stroke survivors and optimize the utilization of healthcare resources. Longitudinal studies are needed to track how caregiver burden changes over time among stroke survivors. This helps in developing better, long-term support strategies. Furthermore, promoting collaboration among healthcare providers, caregivers, and community organizations is critical for developing culturally sensitive support initiatives that resonate within diverse communities. Lastly, continuous quality improvement of caregiver support programs, based on stakeholder feedback and emerging evidence aims to enhance caregiver well-being and overall stroke care delivery.

Conclusion

The studies show that video-based educational interventions and mobile health (mHealth) tools greatly reduce caregiver burden and improve stroke care in Pakistan. Personalized education helps caregivers gain important skills, while mobile health tools provide easy access to crucial information and support, especially in areas with limited resources. These findings highlight the need for a more combined approach that includes education, technology, and policy to improve caregiving outcomes. Future research should conduct thorough, long-term studies to confirm these strategies and ensure they work well in different settings. Eventually, this will help improve the quality of life for both caregivers and stroke survivors.

Ethical approval

Ethics approval was not required for this review.

Consent

Informed consent was not required for this review article.

Sources of funding

Not applicable.

Author’s contribution

Study concept or design – S.J., B.C.; data collection, data analysis – S.K., N.S., Z.B., D.A.Z., and S.A.K.; interpretation and writing the paper – Easha Yaqoob

Conflicts of interest disclourse

None.

Guarantor

Bipin chaurasia

Research Registration Unique Identifying Number (UIN)

Not applicable

Provenance and peer review

Not commissioned, externally peer-reviewed.

Data availability statement

None

Acknowledgments

None.