Chapter 13: Health Literacy in India: A Unique Challenge

What is remarkable about India is that there is such a sharp ontrast between the haves and the have-nots. Health care facilities in some cities are so good that they rival that of the developed nations (for example, Mumbai has more MRI scanners than London). However, there are still many states with health care that is regarded as being among the worst in the world.

Although health literacy is a problem worldwide, it needs to be addressed urgently in India. Ours is the second-most populated country in the world, with a population of

1.2 billion, only slightly behind China. Lack of health literacy poses a great threat to our nations economic stability as health care expenditures are on the rise, along with an expanding population. As a result of overpopulation, access to quality health care and reliable health information can be difficult to come by. India also has an unusually high rate of illiteracy and poverty in both urban and rural areas, both of which contribute to low rates of health literacy. Its not only the general public who suffer from a lack of accurate health information; a report from the World Bank stated, "a detailed survey of the knowledge of medical practitioners for treating five common conditions in Delhi found that the average doctor in a public primary health centre has around a 50-50 chance of recommending a harmful treatment." No wonder that people are wary of the medical system.

The unequal status of women in Indian society also contributes to a lack of health literacy. Learning has traditionally not been encouraged for women and as one parent in Uttar Pradesh put it some years ago, "There is no point teaching a girl; she marries and goes away. Why waste money on sending her to school? " Many studies have shown that the greater the education and social status of women in any given society, the healthier the community.

India is one of the most difficult places in the world to grow in as a child. Almost half of all Indian children under age five are malnourished, and a fifth of worlds deaths in children under age five and over 25% of neonatal deaths (occurring in the first month of life) occur in India alone.

What is remarkable about India is that there is such a sharp contrast between the haves and the have-nots. Health care facilities in some cities are so good that they rival that of the developed nations (for example, Mumbai has more MRI scanners than London). However, there are still many states with health care that is regarded as being among the worst in the world. Though considerable progress has been made in the past few decades to improve the availability of health services, it has not necessarily led to an increase in their utilisation.

Why is it so much harder to promote health literacy in India?

A whopping 41% of women and 18% of men of 15-49 years of age have never been to school. With such a large percentage of the population unable to read and understand the simplest of sentences, even in their own regional language, elivering accurate health is a daunting task. If a patient with tuberculosis (TB) is not able to understand why he needs to continue taking his medications for at least six months, he is not likely to comply with his doctors medical advice. This high dropout rate leads to the development of multi-drug resistant (MDR) TB.

The comparatively low rate of female literacy has also had a significant impact on amily planning and on the high rates of infant and maternal mortality. Many uneducated women are unaware of the types and amounts of nutrition that are important for their children to receive, which contributes to the highest rate of childhood malnourishment in the world.

Despite being the worlds fourth largest economy, many parts of India still suffer from distressingly high rates of poverty. Over 900 million people live on less than Rs 100 per day.

The Indian government currently devotes a mere 1% of its gross domestic product (GDP) to health care costs, much less than what many poor African countries spend. The government has pledged to raise that amount to 2% to 3% of GDP, but it still falls far short of what most developed countries spend on health care, ranging from approximately 6% to 8% of their GDP.

Even if people are educated about how best to eat and care for their health, many are unable to do so because they lack the ability to pay for the simplest foods and medicines. People who do not even have enough money to eat are not likely to have either the capacity or desire to learn about health issues. This becomes a classic chicken and egg issue, where poverty contributes to poor health literacy, which in turn leads to even poorer health.

Another barrier to health literacy in India is marked disparity in social status. While making gradual improvements, India still lags far behind the rest of the world in ensuring gender equality and non-discrimination. Women and people from the Scheduled Tribes (ST), Scheduled Castes (SC) and Other Backward Classes (OBC) are viewed as second-class citizens and often receive discriminatory treatment.

The median age of marriage for women in India is 17.2 years, despite 18 years declared as the legal minimum age. In some remote regions of the country women are barely allowed to cross puberty when they are married off. Not only is this damaging to the womans mental and physical health, it can also be detrimental for her children, who often suffer from intrauterine growth retardation.

Studies have shown that spacing births at least three years apart reduces the risk of infant mortality, one of the most serious problems in India. Nevertheless, many women are not knowledgeable about, or have no access to, family planning methods. The government spends a lot of money promoting family planning in the media, but a lot of this is wasted because the services of experts in social marketing and advertising are not utilised effectively. The Health Ministry still uses age-old boring tools to try to educate the public -and they just do not work anymore.

Public healthcare services in India suffer from a severe lack of adequately trained staff, and given the small amount of money that India spends on health care, this is not surprising.

A survey on health behaviour in India (Jain, Nandan, and Misra, 2006) was quite telling in this regard: Rather than see a physician, most young unmarried women will discuss their health problems with their mothers, elder sisters, or married women in the neighbourhood; married women will discuss their health problems with other women in the village and most often try a herbal or home remedy suggested by these women or will see a local indigenous medical practitioner (RMP) rather than go to a medical centre. It is only when their problem gets worse that they seek a doctor.

It is the elder male members of the family who usually decide where to get professional medical care, particularly one which involves major expenditure.

The socioeconomic status of the family tends to decide what kind of practitioner is sought for treating illness. The poor usually rely on either registered medical workers near them or on local indigenous practitioners, as they are likely to give less expensive treatment and occasionally provide medicines on credit. While some families will seek treatment at government health centres, which are usually less expensive, wealthier families go to private health care facilities and doctors for their treatment.

There is a reluctance to utilise Primary Health Centres (PHC) and their sub-centres due to a number of factors, including long waiting times, long distances from home and unsuitable opening hours. In addition, many village women are unable to go to the clinic without being accompanied by a male member of the family or an elderly female relative.

One of the top reasons people dont visit PHCs is the lack of doctors. In fact, 45 percent of the time, NO doctor is available, and when someone has travelled many miles and at great expense to see a doctor who is not there, it does not encourage them to return, and their experience is likely to be shared with other members of the family and village, leading to an even lesser likelihood of people seeking treatment from health centres.

Furthermore, people report that the health centres have inadequate facilities (most do not even have electricity); and more often than not, they do not have any cost-free drugs on hand. Instead, most patients are given a prescription for medicines that they need to purchase on the open market at great expense. The health centre staff is often unmotivated and lacking in compassion, with many refusing to treat poor patients. Despite the cost, most people prefer using private practitioners over government-run health services due to the greater ease of accessibility, and because private doctors were "more concerned about their problems."

Approximately 72% of the Indian population lives in a rural area, and over 84 million people are members of a Scheduled Tribe. Tribal populations suffer from more severe and longer-lasting illnesses than that of the general population due to a number of factors. Poverty is one of the primary causes, with Scheduled Tribes accounting for 25% of the countrys poorest people.

Access to remote villages is limited by bad roads and by poor (and expensive) transportation options. Medical facilities, with staff who can be insensitive or discriminatory toward tribal members, are often a significant distance from many of these rural villages and most tribal people cannot afford to get to them. Even if they had the money for transportation, most could not be able to afford the cost of services or the drugs prescribed, all of which must be paid for out-of-pocket.

Malnutrition is rife, and problems accessing potable water, along with lack of sanitation and understanding of hygiene issues leads to greater vulnerability to all kinds of diseases.

Indias slums do not fare a great deal better. According to well-known researcher Shradda Agrawal, people living in slums suffer from "poor utilisation of the free reproductive child health services provided by the government, leading to a lack of awareness regarding birth spacing, and very low use of contraceptives."

All is not doom and gloom! There are some outstanding success stories that serve as a beacon of hope.

The Comprehensive Rural Health Project run by Dr Arole at Jamkhed (@ https://crhpjamkhed.org) is an excellent model. They have made extensive use of the Village Health Worker (VHW), usually an uneducated and low caste woman, who serves as the key change agent for a comprehensive approach to health improvement. Selected by the communities themselves, the VHWs not only act as health workers, but also mobilise their communities to achieve better sanitation and hygiene, family planning, women and child nutrition and womens economic rights.

An awe-inspiring example is the work done by the Amte family in Anandwan (@ https://www.anandwan.in/). At Anandwan, human beings (who also happen to be leprosy patients) enter the development process as responsible "subjects" - those who know and act, in contrast to "objects" which are known and acted upon. By helping them to become economically independent and stand on their own feet, they have become productive healthy members of society, rather than remain as unhealthy burdens.

Dr Abhay Bangs outstanding work at SEARCH, Society for Education, Action and Research in Community Health, Gadchiroli, India shows what can be achieved when we have the humility to look at the world through an uneducated persons eyes. He has sent infant mortality rates plummeting in one of the most poverty-stricken areas of the world by training a group of local women (Traditional Birth Attendants (TBAs), known as arogyadoots, which means health messengers) in the basics of neonatal care. These uneducated women were not able to diagnose pneumonia in children reliably because they were unable to use watches to count the breathing rates in infants. To overcome this problem, Dr Bang devised a Breath Counter, which uses an abacus for counting and an hourglass for timing. One bead of the abacus is moved for every ten breaths taken by the child; if the red bead is moved before the sand runs out in the hourglass, pneumonia is diagnosed. This is a great example of the clever use of appropriate technology! (@ www.searchgadchiroli.org)

Since 2000 the Tathapi Trust has been developing the concept of "Body Literacy". They have created workbooks for school children from the age of 10-12 years, which enable them to explore issues around sexuality and growing up. Each book also includes a section on how to stay safe from abuse, including child sexual abuse. The purpose of the Body Literacy workbooks is to encourage children to access useful information about their body, so they can learn to make their own decisions about their health. The workbooks enable teachers and parents to address sexuality issues in a non-threatening way and enable children to develop a healthy concept of their own body and mind. (@https://tathapi.org/body-literacy.html)

The government has tried to learn from these projects. The National Rural Health Mission launched on 12th April 2005 created a corps of female health volunteers, named "Accredited Social Health Activist" (ASHA, which stands for hope) in each village@ https://www.mohfw.nic.in/NRHM/asha.htm. These ASHAs act as a `bridge between the rural people and health care providers. ASHAs are selected by the community, from within the community. They work on a voluntary basis, although compensation is provided to them for specific activities and services. They act as change agents, and are able to mobilise better and more rational health services in the villages in which they live. ile there are other projects that have helped to bring health care to those who cannot travel to a primary health care centre, most of these remain pilot projects - and the government has failed miserably in scaling them up and making them sustainable. If we cannot bring Mohammed to the mountain, we need to bring the mountain to Mohammed, and telemedicine is one of the most efficient ways to bring health care to rural villages. There are now more than 400 telemedicine platforms across the country, which enable for people in remote villages to consult with a doctor by video for only 50 rupees. Many hospitals in India have access to the best of modern Western medicine and mobile health initiatives in the form of village resource centres (VRC) are being established to reach those in the farthest corners of the country.

Today, low health literacy is a threat to the health and well-being of Indians - and to the health and well-being of the Indian healthcare system. A health-literate India would be a richer and more productive country -and if we want to become a developed country, this is one of the first hurdles we need to cross.

• Everyone has the opportunity to use reliable, understandable information that could make a difference in their overall well-being.
• Health and science content would get included in school curricula.
• People would be able to accurately assess the credibility of health information presented by the media
• Public health alerts would be presented to inspire people to take needed action.
• The cultural contexts of diverse people would be integrated into this content.
• Doctors would communicate clearly with their patients, using everyday vocabulary and there would be ample time for discussions between patients and doctors.

Some ask: can we afford to do this? The question should be -Can we afford not to? If we think literacy is expensive, lets not forget that ignorance (in terms of preventable diseases and premature deaths) costs us a hundred times more. The sad truth is that the Indian government has failed miserably in delivering healthcare. Its shameful that there is more reliable health information in Punjabi and Gujarati on the Internet on Canadian and UK government websites than on Indian websites - even though we are considered to be the IT powerhouse of the world. This is a sad commentary on our priorities! Fortunately, socially responsible individuals are now trying to bridge this gap, and JASCAP , a patient support group in Mumbai, has done some great work in translating patient educational materials on cancer into Indian regional languages. These can be downloaded free at https://www.jascap.org.