Challenge of Diabetes Management in West Jaintia Hills of Meghalaya

Syllad | The Rising MeghalayaNovember 16, 2022

Diabetes is caused due to increase in blood sugar levels and is a disease that does not have a cure. It can lead to many complications, such as those affecting the kidney, eyes, and heart, and even stroke. Over the years, the prevalence of diabetes has been rising globally, and India is known as the diabetes capital of the world. According to International Diabetes Federation (2019), by 2030, about 101 million Indians will have diabetes. As per NFHS-5 (2019-2020), the percentage of women and men in the age group of 15 years and above whose Blood Sugar is more than 140 mg/dl in India is 16.3% and 17.9%, respectively. In Meghalaya, predominantly inhabited by the tribal population, the percentage is almost similar to that of India, with 10.3% women and 16.0% men having a blood sugar of more than 140mg/dl.

With this background, a qualitative study to understand the life experiences of people living with diabetes in West Jaintia Hills District Meghalaya was conducted between 2020-2022 as part of a Ph.D. thesis. In West Jaintia Hills District, as per NFHS-5 (2019-2020), the percentage of women and men in the age group of 15 years and above whose Blood Sugar is more than 140 mg/dl in India is 8.8 % and 7.8%, respectively.

Diabetes is often associated with sugar or sweetness. Diabetes is known by different names in different places. For instance, among the Pnar tribe, which mainly inhabits the West Jaintia Hills District of Meghalaya, it is known as kjut chini. While chini means sugar, kjut encompasses different meanings, such as pain, illness, suffering, and sickness. Therefore, in the community, people who consume lots of sugar are considered the ones who will get diabetes. Although diabetes has been known since ancient times, in remote villages of Meghalaya, it is still considered a new disease perceived to be caused by other factors besides sugar. These factors include the change in food habits where traditional vegetables in the wild have been replaced by potatoes, dal, and other vegetables grown with excessive pesticides, such as tomato and cabbage, among others. Other junk foods such as Maggi, cold drinks, increased use of oil in cooking food, and bakery products have reached almost every nook and corner of villages. Diabetes is associated with different misconceptions or myths and beliefs across regions and cultures regarding its perceived cause and treatment. For instance, a misconception that diabetes is caused only among the rich and cultural practices of using herbs and fruits leaves such as that of passion fruit to control the blood sugar levels. These misconceptions and beliefs sometimes act as a barrier to seeking early treatment.

Undoubtedly, diabetes has been associated with opulence for quite a long time. People who are rich and only engaged in a sedentary lifestyle are considered ones who will get diabetes. This notion is predominant even among health workers who believe that people in villages are less likely to get diabetes. According to them, people in villages are primarily farmers and are therefore considered to be engaged in heavy physical activities, thus, are less likely to get diabetes. Nevertheless, findings from the study conducted in the West Jaintia Hills District of Meghalaya show that diabetes is common in villages for over a decade. In most remote and corner villages, few cases of diabetes have been reported and are not as common as in the villages adjacent to the town. The reason for the same cannot be attributed only to nutrition transition, but rather to access to testing of blood sugar of people from villages. The notion among health workers that diabetes does not exist in rural areas could be a bias for not testing people from villages for diabetes. This concern arises from the in-depth interviews conducted with people living with diabetes. When asked about a family history of diabetes, the typical response was, ‘we don’t know, they have never been tested, they checked the BP but not sugar’. Studies conducted by scholars from different disciplines, such as epidemiology and medical anthropology, have put forward multiple risk factors of diabetes. For instance, the medical anthropologist Prof. Emily Mendenhall called diabetes a disease of poverty caused by experiences of daily stress among the most disadvantaged populations. She argues that the risk factors of diabetes need to be reconsidered, and this is based on her study among migrants in different countries such as Nairobi, Chicago and Delhi who experiences trauma and those individuals suffering from HIV. The noteworthy account which is similar to findings conducted in villages of West Jaintia Hills District is the coexistence of poverty with diabetes. Majority of the people who are living with diabetes in the study were found to be poor. Medical Anthropologists have argued that stress from poverty can lead to diabetes or exaggerate blood glucose levels, and poverty makes self-management of diabetes quite challenging.

According to Professor Lesley Jo Weaver, a medical anthropologist, the three pillars of biomedical management of diabetes to prevent complications include- diet, exercise, and medications. However, another pillar considered crucial by health care providers interviewed is regular monitoring of blood glucose levels and regular follow-up. The ability to adhere or comply with advice related to diet, exercises, medications, and follow-up is determined by the individual’s socio-economic status, thereby creating inequality in the self-management of diabetes.

Awareness about diabetes in rural areas is still low. The theme for World Diabetes Day 2022, ‘access to diabetes education,’ is appropriate to address this knowledge gap about diabetes in rural areas. In rural areas, knowledge and understanding of the long-term nature of diabetes and the importance of self-management are limited. Although there are people who have been living for more than 30 years with diabetes in villages, the community is not well-informed about the risk factors, complications, and even the three conventional symptoms of diabetes, i.e., frequent thirst, frequent urination, and frequent hunger. These symptoms were not considered to be associated with diabetes. It was only when people in villages experienced other symptoms such as fever, tingling sensation, blurring of vision and weakness; they started visiting doctors, thereby delaying seeking treatment. Diabetes management might not be that challenging for individuals from high income groups. Their financial conditions act as an enabling factor for them to visit specialists, complying with dietary advice given by doctors or dietitians, regular self-monitoring of blood sugar, and medication adherence.

However, this is not the case for most people who live in villages with rugged terrain that act as a barrier to accessing healthcare services and limited healthcare facilities. Adhering to dietary advice given by health professionals is challenging for people who engage in daily wage work, as eating small and frequent meals seems impossible. Financial constraints also act as a barrier to purchasing different food items essential for a balanced diet, especially in controlling blood glucose. In the context of Meghalaya, women living with diabetes are engaged in a trading occupation where they spend most of their days in the market, which is their main workplace. Women spent most of their time in the market, leaving them with limited time to prepare food for themselves and exercise. This became more challenging for women who were deprived of family support, especially widows and those abandoned by their husbands and deprived of social support.

It has also been argued that diabetes can be managed through proper diet and exercise, which no doubt holds true. However, this argument fails to look beyond diet and medication to address other social determinants of self-management of diabetes. Experiences shared by women in the many ethnographic studies on diabetes, for instance, the study conducted by Lesly Jo Weaver among middle class women in Delhi, explains how women’s daily stress exacerbated their blood glucose levels. These stresses arise from worrying about their children, especially on how to meet their daily needs and many other family problems. Nonetheless, poverty as a social determinant leading to stress has been overlooked by biomedical sciences. According to biomedical sciences, diabetes is mainly due to a ‘lifestyle disease’; it is ‘genetic’, and although stress was considered a risk factor but explanation about what causes stress is limited. There is a need to acknowledge the chronic stress that poor people are undergoing related to their daily survival and its association with the development of diabetes. As in the cases of people living with diabetes in villages of Meghalaya reported that ‘they cannot even afford to buy meat,’ and their diet mainly includes rice and dried fish, forget about other food items they shared they have never even heard of.

The knowledge and understanding about diabetes need to reach the masses, and the notion that diabetes is absent in villages needs to be broken down. The role of the National Program for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke (NPCDCS), launched in 2010 in India, is significant in this regard. The NPCDCS program is implemented at the Health and Wellness Centers (HWCs), an initiative of the Government of India that was launched in 2018. Studies on the implementation of the NPCDCS program have been widely conducted, and many challenges have been identified that hinder the program’s smooth implementation. These include shortages of human resources, inadequate training, absence of information education communication (IEC) materials, and inadequate and irregular supply of glucostrip and antidiabetic medicines. Learnings from best practices of other states, such as Kerala and Tamil Nadu, with regards to the implementation of the NPCDCS program need to be adopted in Meghalaya. For instance, under the Nayanamritham, screening for diabetic retinopathy is also undertaken in Kerala. To streamline the screening process, Meghalaya and other states must also identify and address the barriers to the smooth implementation of the NPCDCS program. Services at the HWCs are provided by the Community Health Officers (CHOs). They are instrumental in educating people in villages about diabetes and providing dietary counseling as it is crucial for the self-management of diabetes. These efforts will help in the early detection and treatment of diabetes, thereby preventing complications from diabetes.  

By | Miss. Alacrity Muksor
Doctoral Scholar, Development Studies
Department of Humanities and Social Sciences IIT Guwahati