Burden and quality of life of caregivers of epilepsy patients and stigma among epilepsy patients: A cross-sectional study

INTRODUCTION

Epilepsy is a common chronic neurological condition affecting about 50 million people globally, with nearly 80% living in developing countries.^[1,2] It involves a range of syndromes with varied causes and symptoms but is marked by recurrent, unprovoked seizures.^[3] In India, the prevalence is estimated at 5.59–10/1,000 individuals,^[4,5]and in Uttarakhand, the incidence of unprovoked seizures is 38.28/100,000 population.^[6] Among non-communicable diseases, after stroke, epilepsy ranks as the second most burdensome neurological disorder.^[7]

Epilepsy affects physical, behavioral, social, and occupational functioning and may cause neurological deficits, which need to be cared for by a caregiver. According to the World Health Organization (WHO), caregivers are individuals who voluntarily assume responsibility for patient care and often face emotional, psychological, physical, social, and financial strain, as well as feelings of shame, guilt, and anger.^[8,9] Inadequate support and limited health services, specifically neurosciences facilities and rehabilitation, further worsen these burdens, affecting caregivers’ well-being, treatment adherence, and the patient’s overall prognosis.^[9,10]

Evidence shows that caregivers of epilepsy patients experience higher levels of depression and poorer overall outcomes than non-caregivers.^[10] Their role extends beyond daily assistance and financial management to providing emotional support, companionship, and reinforcement for social and recreational engagement, which are important for patient self-management.^[11] As the move toward outpatient and home-based care grows, caregivers play a central role in maintaining continuity and long-term health outcomes.^[12] In addition, financial burdens due to hospitalization, travel, and accommodation increase caregiver stress and are influenced by the type, severity, and frequency of seizures.^[13,14]

Stigma remains a major challenge in epilepsy, affecting both patients and caregivers. Individuals with epilepsy frequently face social isolation, discrimination, and barriers to education, employment, and relationships. Perceived stigma, how individuals believe others view their condition, can heighten anxiety, lower self-esteem, and impair psychosocial functioning.^[15-17] These challenges extend to families and caregivers, who experience added emotional, social, and financial stress, ultimately affecting their overall well-being.^[18]

Understanding these factors is essential for developing interventions that support both patients and caregivers, alleviate caregiver strain, and reduce the social stigma associated with epilepsy. Hence, this study aimed to (1) assess the quality of life (QOL) and burden among caregivers of adults with epilepsy and (2) examine the level of perceived stigma among epilepsy patients.

MATERIALS AND METHODS

RESULTS

QOL of caregiver

Mean scores of quality-of-life domains of caregivers were physical 59.08 ± 16.08, psychological 58.57 ± 15.20, social 60.31 ± 19.16, environmental 52.68 ± 16.17, and overall QOL 57.66 ± 14.12 [Figure 1].

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Figure 1: Quality of life of the caregivers of the epilepsy patient (N= 147). SD: Standard deviation, WHO: Word Health Organization.

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Quality-of-life scores differed significantly across several demographic characteristics. Age showed a significant association with all four quality-of-life domains, with moderate to large effect sizes (η² = 0.053–0.161). Educational level was also significantly associated with all four domains (ρ < 0.01), indicating better QOL among caregivers with higher education. Physical domain scores additionally differed significantly across occupational groups and marital status categories. Gender differences were significant for the physical and social domains, while caregivers with chronic illness demonstrated significantly poorer physical and psychological QOL [Supplementary Table 2].

Caregiver QOL scores were not significantly associated with patient family history (ρ > 0.05) or frequency of seizures (ρ > 0.05) across all domains. However, duration of illness showed a significant effect on all domains: Physical (ρ = 0.026), psychological (ρ = 0.002), social (ρ = 0.020), and environmental (ρ = 0.050). Differences in QOL scores by type of seizure were not statistically significant (ρ > 0.05) [Supplementary Table 3].

Caregivers’ burden

The mean burden score was 29.43 ± 14.53; among them, nearly half, 71 (48.3%), reported mild to moderate burden [Figure 2].

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Figure 2: Level of burden among caregivers of epilepsy patients (N = 147). SD: Standard deviation

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A significant association was observed between caregiver burden and caregivers’ age (ρ = 0.018), educational level (ρ = 0.002), and presence of chronic illness (ρ = 0.027). The strength of these associations ranged from small to moderate, as indicated by Cramér’s V values. Other demographic variables, including gender, relationship to the patient, occupation, marital status, religion, and treatment status, were not significantly associated with caregiver burden [Supplementary Table 4].

Caregiver burden showed a significant association with the frequency of seizures (ρ = 0.003) and duration of illness (ρ < 0.001). The strength of these associations was moderate according to Cramér’s V statistics. However, no significant association was observed between caregiver burden and family history of seizures or type of seizure among patients [Supplementary Table 5].

Epilepsy stigma among patients

59 (40.1%) patients reported high stigma, and the mean stigma score was 26.41 ± 11.67 [Figure 3].

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Figure 3: Level of Stigma among epilepsy patients (N=147). SD: Standard deviation

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Among the 10 stigma statements, responses varied across the five-point Likert scale [Table 2]:

Table 2: Frequency of patient responses to stigma statements (N = 147)

Questions	Strongly disagree	Slightly disagree	Neutral	Slightly agree	Strongly agree
	f (%)	f (%)	f (%)	f (%)	f (%)
Determinant: Shame
I find it difficult to express myself with my seizure condition	52 (35.4)	22 (15.0)	8 (5.4)	42 (23)	23 (15.6)
I feel different from other adults because of my seizure condition.	53 (36.1)	19 (12.9)	14 (9.5)	38 (25.9)	23 (15.6)
Determinant: Avoidance
I feel embarrassed and avoid talking about my seizure condition.	55 (37.4)	17 (11.6)	9 (6.1)	25 (17.0)	41 (27.9)
I tend to avoid family events, gatherings and social interactions due to my seizure condition.	61 (41.5)	17 (11.6)	13 (8.8)	31 (21.1)	25 (17.0)
Determinant: Pity
I feel my life isn’t worth as I have to take medication daily and cannot live a normal life.	43 (29.3)	17 (11.6)	15 (10.2)	40 (27.2)	32 (21.8)
I feel like I am a burden to my family members due to my seizure condition.	59 (40.1)	23 (15.6)	17 (11.6)	31 (21.1)	17 (11.6)
Determinant: Concealment
I feel like I have to hide my seizure condition from others.	69 (46.9)	14 (9.5)	15 (10.2)	34 (23.1)	15 (10.2)
Determinant: Effect on Work, Social, Personal relationship
I have difficulty in finding and sustaining suitable means of livelihood.	46 (31.3)	19 (12.9)	27 (18.4)	31 (25.2)	18 (12.2)
I feel I am taken less seriously and discriminated against when people find out about my seizure condition.	66 (44.9)	17 (11.6)	25 (17.0)	20 (13.6)	19 (12.9)
I feel it difficult to form intimate relationships due to my seizure condition.	56 (38.1)	20 (13.6)	37 (25.2)	17 (11.6)	17 (11.6)

f: Frequency

• Shame (items 1–2): Around 35–36% strongly disagreed with statements on difficulty expressing themselves or feeling different, while 23–26% agreed or strongly agreed

• Avoidance (items 3–4): 37–42% strongly disagreed with avoiding discussion or social interactions, whereas 18– 28% agreed or strongly agreed

• Pity (items 5–6): 29–40% strongly disagreed with feeling life is less worthwhile or being a burden, and 21–27% agreed or strongly agreed

• Concealment (item 7): Nearly 47% strongly disagreed with hiding their condition, while 23% slightly agreed

• Effect on work, social, and personal relationships (items 8–10): Responses showed mixed agreement, with 31–45% strongly disagreeing and 12–25% agreeing or strongly agreeing that seizures affected livelihood, social treatment, or forming relationships.

Overall, patient responses indicate varying levels of perceived stigma, with some reporting high impact on social and personal domains [Table 2].

Unadjusted linear regression analysis showed that caregiver burden was significantly associated with caregiver age (ρ = 0.009), relationship to the patient (ρ = 0.022), educational level (ρ < 0.001), occupation (ρ = 0.028), marital status (ρ = 0.043), chronic illness among caregivers (ρ = 0.014), treatment taken (ρ = 0.018), and seizure frequency (ρ = 0.004) [Supplementary Table 6].

In the multivariable linear regression model, education (ρ = 0.029), occupation (ρ = 0.036), marital status (ρ = 0.047), and seizure frequency (ρ = 0.044) remained significantly associated with caregiver burden after adjusting for confounders. Caregiver age was not significant in the adjusted model (ρ = 0.216). The model explained 23.2% of the variance in caregiver burden (R² = 0.232; adjusted R2 = 0.145; ρ = 0.0016) [Supplementary Table 7].

DISCUSSION

Caring for a person with epilepsy is demanding and affects both the epilepsy patient and caregiver. Unpredictable seizures cause emotional stress, while daily assistance adds physical strain. The financial strain of treatment, visits to the hospital, and travel further constrain social life and self-care. Consequently, caregiving significantly reduces caregivers’ QOL and increases psychosocial and practical stress.

In this study, QOL of caregivers was measured using the WHOQOL-BREF scale, which is aligned with the study findings reported by Gutierrez-Angel et.al., conducted in Mexico,^[19] which reported decreased QOL among caregivers of epilepsy patients, specifically when the duration of epilepsy was longer. In that study, mean WHOQOL-BREF scores were lower across all domains.

Epilepsy is a chronic condition that exerts a substantial negative impact on both patients’ and caregivers’ QOL. Age was found to significantly affect all QOL domains, and female caregivers reported lower QOL across all domains, with statistically significant associations found between gender and both physical and social domains. These findings highlight the multidimensional burden experienced by caregivers and underscore the need for customized and focused interventions to support their well-being.

In the present study, findings of caregivers’ educational levels revealed that illiterate individuals had lower scores across all four WHOQOL-BREF domains, with scores gradually improving as education increased from the elementary level to graduation. These findings are consistent with previous research, including studies by Ohaeri et al.,^[25] Ana Maria Gutierrez-Angel et al.,^[19] and Yesuf et al.,^[26] which similarly stated that higher educational attainment is associated with better QOL among caregivers. A study conducted by Ohaeri et al.,^[25] in Sudan found that female and uneducated caregivers reported lower QOL.

A study by Ohaeri et al.^[25] and Yesuf et al.,^[26] demonstrated that caregivers with higher education levels and greater knowledge about epilepsy tend to experience better QOL. Similarly, our study found that caregivers employed in the private sector had lower scores in the physical domain, suggesting a potential association between occupation and physical health. However, no significant relationship was observed between occupation and the psychological, social, or environmental domains.

Furthermore, caregivers with chronic illnesses themselves reported significantly lower QOL in physical and psychological domains, emphasizing the intensified burden of personal health challenges. In line with previous studies,^[19,25] our findings also indicate that a longer duration of the patient’s illness is associated with a decrease in caregiver QOL, reflecting the cumulative impact of long-term caregiving responsibilities. These results underscore the need for targeted interventions, such as caregiver education, workplace support, and health monitoring, to mitigate the physical and psychological burden on caregivers.

When examining the burden, the present study found that 48.3% of caregivers experienced mild to moderate burden, indicating a substantial psychological impact of caregiving. Similarly, a study by Pokharel et al. (2020)^[1] reported that over half of caregivers (58.5%) experienced no or only mild burden, with 27.4% moderate burden and 13.9% a high level of burden. A study from Nigeria by Tajudeen Nuhu et al.^[27] also highlighted that 51.9% of caregivers experienced a significant burden, which was associated with factors such as patient age under 20 years, unemployment, longer duration of epilepsy, shorter seizure-free intervals, and a family history of epilepsy. These similarities in different low and middle-income countries represent that caring for epilepsy causes a considerable burden globally. However, in the Indian context, there are other challenges, such as limited access to and availability of neurologists, and economic constraints may further intensify caregiver burden.

In the present study, caregivers’ QOL was measured by the WHOQOL-BREF, which showed a moderate level of mean scores across all four domains. These scores are comparable to those from Mexico by Gutierrez-Angel et al., in which caregivers reported reduced QOL across all domains of the WHOQOL.^[19] However, the environmental domain score in the present study was relatively lower, which may reflect regional socioeconomic issues and accessibility to healthcare services in the Himalayan regions of Uttarakhand state.

Caregiver burden was significantly associated with caregiver age and education level, while no significant association was found with gender, relationship to the patient, occupation, marital status, or religion. This aligns with a Malaysian study by Lai et al.,^[11] which found that caregiver burden increases with age, while higher educational attainment mitigates burden. Similarly, both our study and those by Gutierrez-Angel et al.^[19] and Lai et al.^[11] indicated that caregivers with chronic illnesses experience a higher burden and lower QOL.

In the current study, longer illness duration of epilepsy and higher frequency of seizures were associated with greater caregiver burden, supporting findings from Malaysia and Brazil^[11,28] who reported increased psychological distress in families coping with frequent seizures. These results highlight the substantial impact of both patient- and caregiver-related factors on caregiver QOL, underlining the need for targeted interventions to reduce burden and enhance QOL. These findings reflect limited number of community-based health care facilities and rehabilitation services in the region, which may exacerbate caregiver stress and burden.

Multivariable regression analysis further showed that caregiver burden was independently associated with education level, occupation, marital status, and seizure frequency after adjusting for potential confounders.

Stigma due to epilepsy remains a significant concern globally, adversely affecting both patient and their caregivers. This stigma manifests in various forms, including societal discrimination, self-blame, and concealment of the condition, leading to deep impacts on mental, physical, and social well-being. Epilepsy patients often experience heightened anxiety and social isolation due to negative societal perceptions and myths about the disorder. Studies from Western and Asian settings^[29,30] identified themes related to epilepsy stigma: Negative societal views, discrimination, poor self-image, feelings of shame, and dependency on others.

The present study findings underscore the multifaceted nature of stigma and its pervasive impact on the lives of those affected by epilepsy. In addition, the stigma extends to caregivers, who often experience psychological distress and social separation due to societal attitudes toward the epilepsy condition. Research reveals that caregivers of epilepsy report higher levels of psychological distress and stigma, which are significantly correlated with their socio-demographic characteristics, including age, education level, and income.^[31]

Based on the present study’s findings, it is recommended that structured educational sessions for patients and caregivers should be delivered by doctors and nurses who are caring for them. Education focused on seizure first aid, medication adherence, stress management for newly diagnosed patients, and coping strategies should be implemented. Community-based awareness program may further reduce stigma regarding epilepsy and enhance the social support system.

CONCLUSION

The present study highlights that caregivers of epilepsy patients experience reduced QOL across physical, psychological, social, and environmental domains and substantial burden. Factors such as caregiver age, educational level, and pre-existing chronic illness, while illness duration and seizure frequency further aggravate the burden. These findings underscore the need for education, supportive interventions, and strategies to reduce stigma for patients and caregivers.