Abstract
The issue of
gender-based inequity in health care, particularly in neuromedicine, is indeed
a matter of serious concern in India. From birth, girls often face
discrimination, which can manifest in malnutrition, unequal access to
education, and inadequate health care, all of which impact their neurological
health. Neurological conditions such as epilepsy, stroke, psychosomatic
disorders, and demyelinating disorders reveal stark disparities in diagnosis,
treatment, and care based on gender. Key factors contributing to this
gender-based inequity in neuromedicine are socio-cultural barriers (deep-rooted
societal norms and cultural practices in India often prioritize the health of
male family members over females. These norms can result in women delaying
seeking medical attention or being denied care altogether. This contributes to
late diagnoses and poor outcomes for women with neurological conditions; myths
misconceptions and misbeliefs (neurological disorders, particularly epilepsy
and psychosomatic disorders, carry significant stigma, especially for women).
Misconceptions around conditions like epilepsy can lead to social isolation,
exclusion from marriage prospects, and neglect in care. Additionally, women’s
health issues are often dismissed as psychological or “hormonal”, leading to
misdiagnoses; access to health care (women often face structural barriers, such
as lack of autonomy in decision-making, lower financial independence, and
restricted mobility), which limit their access to neuromedical care. Health care
resources in rural and underserved areas are limited, and gender biases in
treatment mean that women are less likely to receive timely and adequate
interventions for neurological conditions; malnutrition (poor nutrition among
women), starting from childhood, is a significant contributor to neurological
health problems. Malnutrition during pregnancy, which affects fetal
development, can result in a higher prevalence of developmental neurological
disorders in children, with gender-based neglect often continuing into
adulthood. Potential solutions include awareness campaigns, policy changes,
health care provider training, and community empowerment. By delving into these
areas, we can begin to understand the complexities of gender inequity in
neuromedicine and work toward more equitable health care solutions.
Keywords: Gender inequity,
socio-cultural norms, financial independence, cultural beliefs, LGBTQ health,
societal oppression, transgenerational concepts
GENDER-DEPENDENT HEALTH CARE INEQUITY IN NEUROMEDICINE IN INDIA: A
PATIENT’S PERSPECTIVE
The Concept of
Gender
In medical research, the distinction between
“sex” and “gender” is crucial. While “sex” refers to biological
characteristics, “gender” encompasses multidimensional facets with diverse
determinants like societal roles, behaviors, and expectations shaped by the
social environment. Factors like socio-cultural basis, traditions, ethnicity,
parenting, role playing, responsibility acquisition, and financial influence
have impact on gender spectrum. Biological characteristics are the most
important determinant of sex, while gender includes a broader spectrum
encompassing male, female, and transgender. In India, gender is constructed
through a rigid patriarchal lens that positions men as the primary
decision-makers and providers, while women are relegated to subordinate roles.
This imbalance manifests starkly in health care, particularly in neurology,
where women’s access to medical care is often hindered by socio-cultural norms
and economic dependence on male family members. It is important to consider
that gender roles influence health-seeking behaviors, access to care, and
health outcomes, especially in neurological conditions that are
under-recognized in women, such as epilepsy or migraines1-3.
Determinants
of Gender
Pubertal endocrinal influence along with changes
in psyche as a result of traditions,
transgenerational concepts, responsibility discrimination, parenting role identification, and
socio-cultural impact prepare individuals to develop the idea of self-identification, and at the same time individuals start following the socio-culturally pre-structured and accepted norms, which are the most important gender constructs. Recent
research has shown variation of some brain regions based on gender differences. Researchers have found that the right hemisphere, and particularly the right caudal anterior cingulate, right medial orbitofrontal, and left lateral occipital cortex,
presented no differences or even thicker regional cortices in women compared to men in gender-equal countries, in contrast to thinner cortices in countries with greater gender inequality
4-6. “Multi-deterministic” and “multi-dimensional” concept of gender often have differences based on socio-cultural norms, regulations, and financial background, which may lead to gender inequity in various aspects of life including health
care
7. This suggests that the brain itself can adapt to social environments, and chronic exposure to inequality may shape neurological health. Thus, the interaction between social factors and biology is vital to understanding the gendered nature
of neurological health.
The Indian
Scenario
India has enormous socioeconomic and
socio-cultural diversities and though it is considered as a developing country,
a significant proportion of the total population, unfortunately still have low
educational attainment. As a result, transgenerational concept of roles,
responsibilities, and traditional expectations propagate along with myths,
misconceptions, taboos, religious beliefs and rituals, which have strong impact
on self-identification and gender identity resulting in marked differences
between genders, which ultimately leads to gender inequity8,9. Despite having robust cultural heritage and
history of struggle in favor of gender equity in the past in India, several
socio-cultural, political, financial differences, and traditional beliefs continue to propagate gender discrimination. Stemming from these factors, gender inequity still prevails in our country, skewed in favor of ‘male-dominant society’ at large.
The glorified struggle of ‘cultural renaissance’ in the past partly changed the dynamic note in favor of equity; however, it still fell short to address the actual needs10. Traditions and financial issues are the two most important considerations
in this aspect. From health-care access to availing health-care facility, the differences are stark and disadvantageous for females and marginalized genders in India till date and alarmingly most of the time it pivots around the financial construct
of the family11. India’s health care system reflects the country’s larger socioeconomic inequalities, with marked differences in access to care between urban and rural populations, as well as between men and women. In rural areas, where
70% of India’s population reside, health care infrastructure is often inadequate, with fewer neurologists, limited diagnostic facilities, and poor access to essential medicines. Compounding this is the fact that rural women have less education and
lower financial autonomy, which makes it difficult for them to seek timely medical care. Patriarchal values further restrict women’s ability to prioritize their health. In traditional Indian households, women are often seen as caregivers and are expected
to put the needs of their family before their own. This leads to delayed medical intervention for neurological conditions, as women may avoid seeking care due to financial constraints or fear of societal judgment. The situation is especially dire
for neurological disorders, where early diagnosis and intervention are crucial for preventing long-term complications. Authors, herein, want to depict the differences in health-care access, family support, availability of health-care, and home-care
of ‘diseased’ depending on gender differences in neurological disorders, which is most often crippling and demands outmost care and equity at large.
Is Gender-Based Inequity Evident?
Based on the traditional expectations and
socio-cultural belief system, most of the Indian females still do not have
financial independence, which impedes them from taking independent decisions.
Most of the Indian females have to depend on the male earning family members
for their livelihood. Indian females, out of traditions and age old beliefs,
manage every day household activities and homemaking in an efficient way and by
virtue of their biological capability females carry, potentiate, and propagate family.
However, due to lack of financial independence, most of the time their roles,
responsibilities, and contributions are undermined and taken for granted. The
greater responsibilities of the females in our society are often neglected and
overshadowed by compulsive and rigid societal norms and rituals. Majority of
the females in our society have to rely on their male earning members of the
family for their health care, which forms the basis of inequity12.
Delving deeper, authors intend to bring out the
striking inequity in health care issues regarding neurological disorders,
pivoting on heterogeneous and multiple factors ranging from gender inequity to
disease characteristics per se, in Indian backdrop based on more than
10 years of working experience in this field.
Inequity and Neuromedicine: From Birth?
Authors made an informal, unstructured interview
of a fair number of caregivers visiting the Neurology inpatient department
(IPD), outpatient department (OPD), and the special clinics (Stroke clinic,
Epilepsy clinic, Demyelination clinic, and Neuromuscular clinic) of the largest
tertiary Neurology Care Center in eastern India. It was observed that a
substantial number of caregivers expressed their concerns that for any
neurological ailment of the child, mother is considered responsible for the
disease, irrespective of the nature of disease. Nearly 50% of the caregivers
had the opinion that 'taking care of illness' is the primary responsibility of
females. In India, mothers from poor socioeconomic strata are often criticized
by close family members on giving birth to female child. These differences are
more overt in rural areas with poor socioeconomic status. The scenario in the
higher socioeconomic status and in urban backdrop was also somewhat similar.
However, the gender inequity is more subtle in urban population with higher
socioeconomic status. Though, females (mothers) have nothing to do in gender
determination of their offspring and at the same time are not always
responsible for genetic neurological disorders, still majority of family
members most often make females (mothers) responsible for any sort of
neurological disorder and psychiatric ailment in family. In India, malnutrition
and poor awareness of pregnancy-related adverse events, especially in females
hailing from rural poor socioeconomic status, are still quite prevalent. As
consequences, birth asphyxia and related hypoxic injury of neonates are common.
Not uncommonly, mothers are made responsible for adverse pregnancy outcome,
though poor awareness, delayed health care facility seeking behavior, and
neglect by husband/father (male members of the family) are the most crucial
determinants. However, these are most frequently overlooked, paving the path
for wider gender inequity. Often Indian females have to depend on the earning
male members of the family for nutrition and care in pregnancy and lactation.
To worsen the situation further, this care is mostly below par, especially in
economically constrained community and in families with low educational
reserve. This augments the sufferings of the females, ultimately leading to
various catastrophic consequences affecting both the mother and child and
society at large. Any acquired or genetically determined neurological and
psychiatric disorders in females are diagnosed late, and most of the time it
has been observed that there is a substantial delay between the onset of
disease and first health care access13-18.
Despite advances in medical care, the inequity
in health service access between men and women is undeniable in India. Women,
especially in rural areas, often face significant barriers in obtaining
neurological care. Gender-based discrimination plays a pivotal role in the
delay of diagnosis and treatment of neurological disorders in women. Conditions
like epilepsy, stroke, and psychosomatic disorders, which require immediate
attention, are often ignored or under-diagnosed in women, leading to poor
health outcomes. Socio-cultural myths, such as viewing seizures as divine
punishment or psychosomatic disorders as mere attention-seeking behavior,
exacerbate these issues. Women who are financially dependent on male relatives
may have little control over health care decisions, further delaying medical
intervention. This systemic neglect is not just a reflection of health care
inequity but a broader societal disregard for women’s health, where their
symptoms are often minimized or overlooked altogether.
GENDER INEQUITY IN NEUROLOGICAL CONDITIONS
Epilepsy
Epilepsy serves as a powerful example of the
ongoing gender disparity in Neurology. In India, the stigma surrounding
epilepsy disproportionately affects women, particularly in rural and
traditional families. Women with epilepsy often face discrimination in
marriage, with many potential suitors withdrawing once they discover the
woman’s condition. This fear of social ostracization leads to families
concealing their daughters’ epilepsy diagnoses, delaying appropriate medical
treatment. Epilepsy in females is still a social stigma in several countries
including India. Epilepsy management is difficult especially in females due to
suppression of facts by family members, which may be due to the fear of being
isolated from society, stigma, taboo, difficulty in arranging marriage for
female patients with epilepsy and/or due to the poor awareness. Noncompliance
to antiepileptic drugs (AEDs) is very common due to poor financial support from
the family members. The societal perception of epilepsy and dissociative attacks
are similar. Family members often try to trivialize the issue by attributing
the event to non-specific weakness or influence of supernatural power or God.
Further, they seek help from traditional health care workers (quacks).
Ignorance, low educational attainment and inequity further complicate the
issue. Marriage is quite difficult in female patients with epilepsy in India.
This stems from the prevalent general notion that epilepsy runs in the family
and possibility of having epilepsy in child/children is inevitable when the
mother has epilepsy. Due to the fear of criticism from in-laws and resultant
disharmony and psychological stress, there is often a tendency to discontinue
AEDs after marriage resulting in breakthrough seizure. Alternatively, some continue
to take AEDs secretly, unmonitored and without medical consultation,
consequently when pregnancy happens, often AEDs are continued without
necessary modifications, augmenting the possibility of fetotoxicity19.
Idiopathic
Intracranial Hypertension and Cerebral Venous Sinus Thrombosis – Sexual
Independence: An Enigma?
In the rural areas
of India, females have very little sexual independence as well. This majorly
results in giving into the wishes of male partner. Furthermore, they are often
compelled to use measures of contraceptions that might not be ideally suited or
in some cases harmful to them (commonly oral contraceptive pill [OCP]), respecting the wishes of their male partner. We have observed several related health issues in females due to this previously mentioned factor, like fatal idiopathic
intracranial hypertension (IIH) and/or cerebral venous sinus thrombosis (CVST), which again was diagnosed late due to poor perception, awareness, and
concern. Male partner often seems to be reluctant to use barrier method of
contraception in few areas of our country because of various taboos,
misconceptions, and poor educational reserve, which may herald life-threatening
sexually transmitted diseases and unplanned pregnancies.
Stroke
In India, stroke is a significant cause of
morbidity and mortality, and gender disparities in stroke care are
well-documented. Studies suggest that women are less likely than men to receive
timely intervention, even though they experience higher stroke severity and
poorer outcomes. Women often delay seeking care due to cultural beliefs that
downplay the seriousness of symptoms like dizziness, headache, or weakness,
which are commonly dismissed as stress-related or hormonal. Moreover, after a
stroke, women are less likely to be referred for rehabilitation services, which
are essential for recovery.
Caregiving responsibilities further impede
their ability to attend follow-up appointments or engage in
rehabilitation exercises, as their role as caregivers continue to take
precedence, even in the face of serious neurological conditions.
Demyelinating Disorders
Picture of gender inequality is mostly reversed
when we focus on patients with multiple sclerosis (MS), a primary demyelinating
disorder, characteristically more common in females. MS being primarily a
disease of higher socioeconomic status, the margin of inequity between genders
is much narrow. Here, most of the female patients are aware of their disease
state, availability of health care facility and can take independent decision
regarding treatment. Financial stability and higher educational background are
the two most independent factors responsible for this. Though MS patients are
predominantly young females, however, hailing from higher socioeconomic status
and we rarely observe inequity in terms of health care seeking attitude, family
support, and treatment continuation.
In contrast, the burden of somatization,
somatoform pain disorders, depression, and anxiety in young/middle-aged females
from lower socioeconomic strata indirectly argue in favor of ongoing inequity,
poor lifestyle, and faulty coping strategies of the females in the families
with negligible support and presence of oppression. Intertwined with
socioeconomic condition, especially in rural areas, gender-based oppression
(females often being in the receiving end of it) coupled with age old
traditional thoughts and responsibilities pave the way for gender inequity in
different spheres of mental health related issues in females.
SEXUAL AND
REPRODUCTIVE HEALTH IN NEUROMEDICINE
Pregnancy and Neurological Health
Prevalence of malnutrition and hypoxic ischemic
encephalopathy in newborn children are the two most important reflectors of
poor women’s health during pregnancy. Neurological events during pregnancy are
often ignored by family members and remain undiagnosed and untreated. Family
members usually consider any neurological problem in pregnancy as weakness or
vitamin deficiency driven by lack of knowledge and traditional thoughts
prevalent in rural India. Appropriate health care system to address these special
issues is also lacking in this regard.
Ischemic or hemorrhagic strokes due to
inappropriate blood pressure and glycemic control are not uncommon. Pregnancy
related unique issues like posterior reversible encephalopathy syndrome,
reversible cerebral vasoconstriction syndrome, CVST, IIH, first attack or
recurrence of attack/s in neuromyelitis optica spectrum disorder and
anti-myelin oligodendrocyte glycoprotein antibody disease, convulsions related
to eclampsia and/or breakthrough seizure in females with history of epilepsy
are also often poorly recognized by family members as well as by health care
personnel as there is dearth of specialized centers in rural India till date.
Guillain-Barre syndrome, myasthenic crisis, myelitis, and hypokalemic paralysis
often remain under-recognized and undiagnosed in pregnancy claiming lives.
Pregnancy introduces a unique set of challenges for women with pre-existing
neurological conditions or those who develop neurological complications during
pregnancy. In rural India, where access to prenatal care is limited, these
conditions often go undiagnosed until they result in severe outcomes such as
stroke or permanent neurological damage.
Moreover, societal expectations surrounding
pregnancy and motherhood often prevent women from seeking medical care for neurological conditions, as they
fear being blamed for adverse outcomes. Women who experience miscarriages,
stillbirths, or neonatal complications such as hypoxic-ischemic encephalopathy in their infants may be stigmatized and blamed for the child’s condition, even when the cause is unrelated to maternal behavior. Unfortunately, female child is
still unwanted in rural India based on socio-cultural beliefs, financial instability, low educational attainment, religious misperceptions, misconceptions, and taboos.
Strong legislations have been in place to
mitigate this issue, still its utility lags far behind the desired results.
Females are often criticized by family members for giving birth to female
child, affecting the mental well-being of mother, further augmenting the
possibilities of depression/postpartum blues/postpartum psychosis, or may lead
to unmasking of various latent psychopathologies in mothers.
Most of the time mothers are held responsible
for any disease/adverse life-related events of their children, which lead to
mounting of guilt in the mother. These inequities are sometimes more obvious in
postpartum period. Poor socioeconomic condition, responsibilities based on
prefixed socio-cultural norms and regulations, poor nutrition along with
postpartum mood changes and lack of family support not only render the mothers
helpless but also widen the gender dependent gap of inequity. Moreover, in country
like India, reproductive rights of women hailing from poor socioeconomic
section and low educational reserve are ignored and often not practiced in
family. Sexual rights, will and independence are often criticized at the cost
of husband’s intention, planning and motive, further make inequity obvious and
overt.
Contraceptive Choices and Neurological Health
The misuse of OCPs is another significant factor
in the neurological health of women in India. In some regions, OCPs are used
without medical guidance, increasing the risk of conditions like CVST and IIH.
Women are often pressured into using contraception without proper counseling
regarding the risks and benefits, leading to adverse health outcomes. In the
absence of adequate health care access, these conditions may go undiagnosed
until they result in severe complications. The lack of autonomy women face in
making reproductive health decisions is a significant factor in these outcomes.
Decisions regarding contraception are often made by male family members or
dictated by societal norms, further limiting women’s control over their health.
The result is a health care system that is reactive rather than proactive,
addressing neurological conditions only when they have reached critical levels.
Gender Disparities in Neuroinfectious and
Neuroinflammatory Disorders and Caregiving for Chronic Neurological Disorders
Our observations about neuroinfectious diseases
in females, particularly in rural India, unfortunately highlight inequality to
even greater degree. This is evidenced by higher proportions of late diagnosis
and more frequent complications, morbidity and mortality among females due to
lack of awareness, negligence, poor family support, paucity of empathy towards
the females. And they further fuel the inadequate follow-up and poor compliance
to the therapy widening the prevalent inequality.
Connective tissue
disorders (systemic lupus erythematosus, Sjogren’s syndrome, rheumatoid
arthritis, and sarcoidosis) related neurological complications are more common
in females in line with the gender predilection of these diseases. However,
this may also be a reflector of poor family care, support, inappropriate
specialized health care access, and also a consequence of late diagnosis. India
is a country of high religious diversities where gender inequity stems from
traditional thoughts, transgenerational propagation of misconceptions, taboos,
group/herd religious beliefs, rituals, and distorted ideas on gender-dependent
responsibilities and roles. All these factors critically hinder the attainment
of desired health-care equity.
It has also been
commonly observed that when a female member of the family suffers from chronic
neurological ailments like dementia, Parkinsonism or other degenerative
neurological disorders, there are fewer caregivers around, in sharp contrast to
their male counterparts where females of the family are usually engaged in
caregiving. It is also seen that family members of the admitted female patients
(in neurology indoor) are often lesser in number, less anxious, and more
agreeable on disease-related adverse outcome during communication session by
treating neurologists regarding the patient’s status. Most of the time, family
members are unaware about the course of the disease or symptoms of their
patients (females) prior to hospitalization20.
LGBTQ+ and Gender
Minorities in Neuromedicine
LGBTQ+ individuals often face unique challenges
related to neurological care, including access to mental health support,
hormonal therapy, and surgery-related complications.
For example, transgender individuals undergoing
hormone replacement therapy are at a higher risk for conditions such as venous
thromboembolism, which can increase the risk of stroke or CVST. Yet, there is
limited research and clinical guidance available in India for health care
providers treating neurological conditions in LGBTQ+ individuals. The
intersection of discrimination, stigma, and a lack of tailored health care
services often leads to delayed diagnosis and treatment of neurological
conditions in LGBTQ+ individuals. Furthermore, they face higher levels of
mental health disorders, such as depression and anxiety, which may exacerbate
the symptoms of underlying neurological conditions. Unfortunately, many LGBTQ+
patients avoid seeking care due to fear of discrimination and mistreatment by
health care professionals, perpetuating a cycle of neglect21.
ADDRESSING GENDER
INEQUITIES IN NEUROMEDICINE
Policy-Level Interventions
To address the pervasive gender inequities in
neuromedicine in India, systemic changes at the policy level are essential.
The government must prioritize the development of gender-sensitive health care
policies that recognize the unique needs of women and LGBTQ+ individuals.
Increasing funding for public health programs that focus on neurological health
is crucial, especially in rural areas where resources are limited.
Policies must also aim to train health care
providers to recognize and address gender bias in their clinical practice.
Medical education curricula need to be revised to include training on gender
differences in neurological conditions, as well as the social determinants of
health that affect women’s and gender minorities’ access to care. This training
will empower health care providers to deliver more equitable care and reduce
diagnostic delays for conditions like epilepsy, stroke, and demyelinating diseases.
Community-Based Programs
Community-based interventions are essential to
addressing the cultural and societal barriers that prevent women from seeking
neurological care. Public health campaigns should focus on dispelling myths
surrounding neurological conditions, such as epilepsy, and promoting early
intervention for women and gender minorities. These programs should target
rural areas, where access to information and health care services is often
limited. Furthermore, engaging local communities in the development and
delivery of these programs can help to create culturally appropriate and
sustainable interventions. Involving women’s groups and local leaders can help
to shift societal attitudes toward women’s neurological health and encourage
families to prioritize health care for women and girls.
Empowerment and Education
Education plays a pivotal role in addressing
gender inequities in health care. Empowering women with knowledge about their
own neurological health, including the importance of early diagnosis and
treatment, can help to overcome some of the socio-cultural barriers they face.
Educational programs should be tailored to different literacy levels and
delivered in local languages to ensure they reach the widest audience possible.
Additionally, providing women with greater financial independence through employment and
microfinance programs can help to reduce their dependence on male family
members for health care decisions. Financial autonomy gives women the power to
seek medical care when needed, improving their overall health outcomes.
Improved Access to Health Care
Access to health care must be improved,
particularly in rural areas, where women face significant barriers to receive
neurological care. Strengthening primary health care services and integrating
neurological screening and treatment into existing maternal and child health
programs can help to ensure that women receive timely care. Moreover, mobile
health clinics and telemedicine services can be used to bridge the gap between
rural communities and specialized neurological care. These services can provide
women with access to neurologists and other specialists without the need for
long-distance travel, which is often unaffordable for families living in
poverty.
CONCLUSION
Biologically acquired masculinity, physical
prowess, financial independence, socio-culturally and traditionally gained
roles and responsibilities (claimed to be superior by males) make the males
“pseudo-superior”. This concept is spread transgenerationally based on
socio-cultural misconceptions and misbeliefs, paving the path for gender
inequity. Inequity in health care is quite prevalent in India. The various
angles perpetuating the gender inequities in health-care service have been
critically appraised (neurologist’s perspective). Discrimination in roles and
responsibilities between genders, imparting extra importance on financially
productive works and by making financially driven issues priority
(socio-culturally acceptable male work pattern) than natural, homemaking and
creative works (socio-culturally acceptable female work pattern) has led to
males establishing their pseudo-supremacy, which is also reflected in health
care-related issues. Sexual dominance by masculinity rather than love and will
speaks against equity. Financially productive works are nested in people’s mind
as real (valuable) whereas homemaking, care, sustaining integrity in families
are often ignored, devalued, and considered less important. Inequity becomes
more evident when power, finance, and crude sexuality take upper hand over
nature, creation and love, and when higher order emotions become less
prioritized than crude emotions. The authors herein believe that solution lies
in education and financial independence/stability of females and marginalized
genders. Mere policy making would not be beneficial, without proper execution,
implementation, and monitoring of the policies. Strong legislations and strict
adherence to combat against societal oppression and violation of basic rights
should be strictly maintained. Breaking the tradition of gender based taboos
and socio-cultural beliefs/norms by uplifting societal cognitive values and
abilities towards gender equity are of essence. Appropriate infrastructure
development to cater to the specialized issues for females and marginalized
genders are the need of the hour. Financial constraints must not be the barrier
for raising awareness for equity and provision for equal health care facility.
Disclosure: None.
Conflicts of
Interest: None.
Funding Statement: This article did not receive any specific
grant from funding agencies in the public, commercial, or not-for-profit
sectors.
Research involving
Human Participants and/or Animals: Research involved single human participant, no animals are involved.
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