Prevalence and consequences of stigma associated with migraine in a rural Indian headache clinic

INTRODUCTION

Migraine has been recognized as a significant global health concern, ranking second in years lived with disability according to the global burden of disease study 2016.^[1] This highlights its substantial impact on individuals and societies worldwide. In India, the prevalence of migraine is notably high, particularly in rural areas, where it ranges from 14.1% to 25.2%.^[2,3] Despite its high prevalence, migraine remains under-recognized and under-treated in these regions, largely due to limited access to healthcare and cultural beliefs.

Stigma, a pervasive issue in chronic illnesses, significantly impacted patients’ quality of life, mental health, and treatment adherence in the past.^[4,5] For individuals with migraine, stigma led to social isolation, decreased self-esteem, and reluctance to seek medical help, thereby exacerbating the burden of the disease.^[6,7] The previous studies indicated that stigma was a common experience among migraine patients, associated with greater disability and reduced quality of life.^[8,9] The invisible nature of migraine, its episodic pattern, and the misconception that it is “just a headache” contributed to its stigmatization.^[10,11] Despite the growing recognition of the stigma in migraine, research in low-resource, rural settings like India was scarce, highlighting a critical knowledge gap. Cultural factors and traditional beliefs in these areas may amplify stigma, impacting treatment-seeking behavior and disease management.

This study aimed to assess the prevalence and consequences of stigma associated with migraine in a rural neurology clinic in Western India. By exploring sociodemographic factors and their association with stigma levels, the study sought to inform the development of culturally sensitive interventions to reduce stigma and improve migraine management in underserved rural populations.

MATERIALS AND METHODS

RESULTS

Correlations

A weak but statistically significant positive correlation was observed between total SSCI-8 scores and HIT-6 scores (r = 0.25, P = 0.014) [Figure 1]. Enacted stigma showed a significant correlation with HIT-6 scores (r = 0.20, P = 0.047), while internalized stigma did not (r = 0.15, P = 0.14).

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Figure 1:

Scatterplot depicts the correlation between SSCI: Total score and HIT score. The blue trendline represents the general trend of correlation between the two variables. The shaded gray area represents the 95% confidence interval of this trendline. There is a positive correlation between perceived stigma levels (Total SSCI-8 score) and headache impact severity (HIT-6) (r = 0.25). SSCI: Stigma scale for chronic illness, HIT: Headache impact test.

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Regression analysis

Regression analysis revealed significant associations between demographic factors and stigma scores. Widowed status was associated with significantly lower total SSCI-8 scores compared to unmarried participants (β = –14.43, P = 0.006). Education level showed a nonlinear relationship with stigma, where primary, secondary, higher secondary, and graduate education levels were associated with higher SSCI-8 scores compared to uneducated participants [Figure 2]. Regular follow-up was associated with significantly lower stigma scores (mean difference = –4.32, 95% CI: –6.89 to –1.75, P = 0.001), and this association persisted after adjusting for disease severity and sociodemographic factors (adjusted β = –0.20, 95% CI: –0.34 to –0.06, P = 0.005). There were no statistically significant correlations between HIT-6 scores and demographic characteristics, indicating that headache impact was consistent across subgroups. Multiple imputations for missing data (3.5% of total data points) did not substantially alter the main findings, indicating minimal impact on results.

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Figure 2:

Association between education and stigma severity in chronic illness (SSCI: Total Score) depicting highest stigma scores in patients with primary education followed by higher secondary and secondary education, respectively. Postgraduates have least stigma scores. SSCI: Stigma scale for chronic illness.

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DISCUSSION

This study provides novel insights into the prevalence and patterns of perceived stigma among individuals with migraine in a rural Indian setting, addressing a critical gap in our understanding of migraine-related stigma in low-resource regions. Our findings reveal a complex interplay between sociodemographic factors, clinical characteristics, and perceived stigma, with important implications for migraine management and public health interventions in rural populations.

According to the HIT-6 instrument, there was a positive link between higher perceived stigma and more severe headache effect, a finding that is consistent with other studies conducted in different contexts.^[19] This association persisted after adjusting for potential confounders, suggesting a robust relationship between stigma and migraine burden. Several mechanisms may underlie this relationship. Stigma-related stress could exacerbate migraine pathophysiology through allostatic load mechanisms.^[20] In addition, perceived stigma may create barriers to care-seeking and treatment adherence, potentially leading to suboptimal management and increased disability.^[6] The visibility of severe migraine phenotypes may also heighten experiences of enacted stigma, creating a potential feedback loop.

Our study revealed lower overall stigma scores compared to previous research in other settings [Table 2].^[9,19] This unexpected finding warrants careful consideration. Several factors may contribute to this difference. Studies show migraine to be more prevalent with a greater global burden of disease in high-income countries than in South Asian countries.^[1,21] This might cause individuals to contemplate on the diseases that are more prevalent in a particular geographical region. Along with geographical variations, disease is influenced by geo-economic and psychosocial factors.^[22] Cultural variations in the conceptualization and expression of stigma could play a role, with rural Indian populations potentially having different frameworks for understanding and reporting stigma experiences. The adaptation of the SSCI-8 instrument to the local context may have also influenced response patterns. In addition, the lower scores could reflect a genuine difference in stigma experiences in this population, possibly due to stronger community support systems or different societal attitudes toward neurological disorders in rural India.

A key finding of our study is the non-linear relationship between education levels and stigma scores. Comparing participants with basic to undergraduate education to those with graduate or postgraduate education, the former showed noticeably greater levels of stigma. This contrasts with the linear relationship often assumed in health disparities research. Several factors may contribute to this pattern. Individuals with very low education may have limited exposure to societal misconceptions about migraine, while those with higher education may have better access to accurate information and resources to counter stigmatizing attitudes. The intermediate group may be more vulnerable to internalized stigma due to greater awareness of societal attitudes without the tools to effectively challenge them. This finding highlights the need for tailored anti-stigma interventions targeting vulnerable groups with lower education levels. Public health campaigns and educational programs should be designed to address the specific needs and misconceptions prevalent in these populations. Healthcare providers in rural settings should be trained to recognize and address stigma-related barriers to care, particularly among patients with intermediate education levels.

Our study revealed an unexpected finding: Widowed women with migraine reported significantly lower stigma scores compared to unmarried women. This could be attributed to differing social perceptions, with widows potentially experiencing more empathy, while unmarried women face stricter societal expectations. However, as the sample size of widowed participants was low, this observation should be interpreted cautiously. To confirm this conclusion and investigate the underlying sociocultural elements that can affect stigma experiences among various marital status groups in the migraine community, future studies with larger, more diverse populations are required.

The association between regular clinic follow-up and lower stigma scores is an intriguing finding with potential implications for clinical practice. This relationship may be reciprocal: people who feel less stigmatized are more likely to seek care on a frequent basis, and regular medical follow-up may lessen stigma by providing support and knowledge. Clinicians should be aware of the potential benefit of regular follow-up and consider strategies to encourage consistent engagement with care, particularly for patients at higher risk of experiencing stigma.

This study has a number of limitations that should be noted. Causal judgments about the observed connections are not possible due to the cross-sectional design. Our study sample size is adequate for the primary analysis but may have limited power for detecting smaller effect sizes in the subgroup analyses. Selection bias is possible, as individuals seeking care at a tertiary center may differ systematically from those who do not access such care. The study population might not be representative of all migraine sufferers because it was selected from a single rural tertiary care facility. The self-report scales used in the study may have recall bias and social desirability effects. Future research should address these limitations through longitudinal designs, larger and more diverse rural and urban samples, and the inclusion of other objective measures of migraine severity, psychiatric comorbidity, and impact. Qualitative studies could provide deeper insights into the lived experiences of stigma among rural Indian migraine patients and help elucidate the mechanisms underlying the observed associations. In addition, intervention studies testing targeted anti-stigma programs in this population are needed to translate these findings into improved patient outcomes.

CONCLUSION

Our research indicates a moderate level of perceived stigma among migraine patients in rural India, with a significant positive correlation between stigma and headache impact. Interestingly, education level showed a non-linear association with stigma, with higher stigma reported among those with primary to undergraduate education compared to those with higher educational attainment. Participants who attended regular clinic follow-ups reported lower levels of stigma. Our study results suggest that tailored interventions are needed to fight stigma and make things better for people with migraine.