Newswise – The role of primary health care in identifying, diagnosing and treating people with epilepsy is becoming increasingly important, particularly in light of the recent adoption by the World Health Assembly of the Intersectoral Global Action Plan (IGAP) on Epilepsy and Neurological Disorders.
However, societal attitudes and stigma surrounding epilepsy can represent major barriers to improving care. Without at least a rough idea of how many people need to be diagnosed and treated in a given area, it is difficult to identify needs and gaps. In India, where many people hide epilepsy even from caregivers, mapping the current status of epilepsy care in a rural area of Andhra Pradesh has been almost a wasted exercise.
A team of researchers visited two primary health care centers in Bhimaravam to assess the primary health care system’s care for people with epilepsy. The visits were part of a coordinated clinical and research initiative called STOP Epilepsy, which aims to improve epilepsy care in three districts in India:
- Gauriganj in Uttar Pradesh
- Bhimavaram in Andhra Pradesh
- Nawanshahr in Punjab
Bhimaravam on the coast of southern India has a population of around 225,000. Most people work in paddy cultivation or in fish farming. The two health centers – in Turputallu and Gollavanitippa – each serve around 50,000 people.
“It took us a few hours to reach the centers,” said Gagandeep Singh, an epilepsy researcher from India. “That was mainly because navigating the potholed road was quite a challenge.”
At each center, the team interacted with physicians, pharmacists, midwives and staff from Accredited Social Health Activists (ASHA).
“We asked doctors how often they see people with epilepsy in clinics,” Singh said. “In Turputallu the doctor replied: ‘Not too many. I would see about 60 to 70 outpatients each day and maybe see 1 or 2 people with epilepsy in a week.’”
In Gollavanitippa, the pharmacist told the group that the pharmacy had phenytoin 100 mg tablets and injectable diazepam as anti-seizure medications.
“When we asked about other epilepsy drugs, he said, ‘Other epilepsy drugs are never prescribed, so we never ask for them,'” Singh said. The small number of people with epilepsy in hospitals was the main reason for the limited availability of antiepileptic drugs.
ASHA workers in India: Community health at the village level
Accredited Social Health Activist (ASHA) workers are female community members, typically between the ages of 25 and 40, who work largely on a voluntary basis, although they receive some financial compensation. They are being trained by the Indian Ministry of Health and Family Welfare as part of the country’s national health mission, which aimed to hire one ASHA worker for every 1,000 residents
ASHA employees must be primarily residents of the village or area in which they operate and plan to live there for the foreseeable future. They promote healthy behaviors through education and prevention, and support access to health care in villages and outskirts in Indian cities. They are a key factor in communication, awareness and access to care in these areas.
ASHA is not just an acronym; it means “hope” in Hindi.
There are almost 1 million ASHA workers in India. In May 2022, ASHAs were one of six recipients of the World Health Organization’s Global Health Leaders Award.
In Turputallu, researchers asked ASHA workers how many people with epilepsy lived in the communities they served.
“There was a long silence,” Singh said, “after one of the ASHA staff said she was aware of such a case in her village.”
When asked about problems people with epilepsy might face, Singh mentioned that one worker believed people with epilepsy were usually fine, but they might have problems on “non-moon days.”
The idea that seizures are somehow influenced by the phases of the moon has been around for thousands of years. The Romans referred to people with epilepsy as “lunaticus” (moonstruck) and believed that the gods intervened at certain stages. Limited research suggests a possible negative association between seizure frequency and the portion of the moon lit at night; However, other research suggests the opposite trend.
At Gollavanitippa, ASHA workers initially said they did not know of anyone in their community with epilepsy.
“When the interpreter persisted, one said she knew of a family in her village where both a brother and sister had epilepsy,” Singh said. “The sister died prematurely and the brother is being treated for epilepsy in a private facility. She also mentioned a woman who was being treated and had married some time ago. But it appears that the epilepsy was not explained during the marriage negotiations and there was considerable discord between the birth and marital families in this regard.”
Arranged marriages account for almost 80% of all marriages in India and much of South Asia. Parents or elders in the family negotiate arranged marriages; potential spouses have little to no opportunity to meet or discuss issues.
In India, epilepsy was a legitimate ground for divorce until 1999 when the Hindu marriage law was amended to remove it, largely due to the efforts of neurologists. Despite the legal benefits, societal beliefs about epilepsy remain negative.
“All ASHAs agreed that hiding epilepsy is fairly common in both sexes and this has been done primarily by families to avoid ruining marriage prospects,” Singh said. “However, the use of native medicines or witchcraft was not common. People would like to see a specialist if resources allow.”
Singh said another ASHA employee remembered a man with epilepsy. She thought he might see a general practitioner, but took his medication infrequently because he couldn’t afford regular care.
In regions of the world with few epilepsy specialists, the World Health Organization (WHO) encourages primary care physicians and other healthcare providers to engage in epilepsy care. However, Singh said, this visit suggests that, at least in this Indian district, very few people with epilepsy attend primary health care centers. Even community health workers know few people with epilepsy in the communities they serve.
“Then where do people with epilepsy seek help?” asked Singh. “There might be alternative avenues of treatment, but in the case of Bhimaravam no alternative medicines or traditional healers are used. Do they just stay behind shadows?”
problems with medication
Despite the number of anti-seizure drugs on the WHO and Indian List of Essential Medicines, few of these drugs are available in primary health care pharmacies. And the GPs in Bhimaravam seem to treat few people with epilepsy.
“Even if more people came to primary care centers to be diagnosed and treated for epilepsy, would care providers be able to treat their epilepsy effectively?” asked Singh.
The journey to Bhimavaram emphasizes that there are several obstacles to receiving effective care, he said.
“Cultural prejudices about epilepsy mean that patients and families are unwilling to seek help for the disease or to educate health care workers about the symptoms. Many community health workers don’t have the training to recognize seizures, educate the community about epilepsy, or recommend appropriate treatment in most cases,” he said.
“Finally, the availability of medicines at the community level is limited. Many of the common epilepsy medications are either not available at all or only inconsistently. To reduce the treatment gap, all of these issues need to be addressed.”
Stigma as a Research Obstacle: Life Experiences of Women with Epilepsy in India
In 2014, Jane von Gaudecker conducted an intensive study of six women in Kerala, India, in which she highlighted the problems they face related to marriage and other psychosocial and medical issues.
Von Gaudecker, currently an assistant professor at Indiana University School of Nursing, dressed traditionally while conducting the study and was fluent in the local language. However, she still became known as the “epilepsy lady,” which was a major obstacle to interviewing women. Of the 21 potential participants, 8 would not speak to her, despite promised confidentiality, for fear the community would associate them with epilepsy. They feared the impact on their daily lives and marriage prospects.
Six women consented to detailed interviews; The results are detailed in a publication and in an Epigraph article.
ILAE is a global organization of health professionals and scientists committed to a world where epilepsy does not limit people’s lives.
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