The Science of Diabetes Self-Management and Care2023, Vol. 49(6) 462 –476© The Author(s) 2023Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/26350106231208155journals.sagepub.com/home/tde
AbstractPurpose: The purpose of the study was to explore the cultural beliefs and practices of the Pnar tribe in terms of their self-management of diabetes.
Methods: A qualitative study design using an ethnographic approach was adopted to understand the experiences of the Pnar women with type 2 diabetes. Around 60 women living with diabetes across 20 villages in the Thadlaskein rural block were interviewed in the Pnar language. Thematic analysis was employed to identify the pattern related to beliefs and cultural practices in the self-management of diabetes across the data set.
Results: Misconceptions related to diet, such as all vegetables grown underground need to be avoided and bitter herbs and vegetables are good for blood glucose control, were reported. Participants used home remedies and complementary and alternative medicine to bring down their blood glucose levels. Participants believe that diabetes is an episodic or short-term illness and can be cured through herbal medicine. Participants reported that consuming atta or round flat bread made of wheat flour instead of rice caused “acidity.” Conclusions: Misconceptions are barriers to disease management, which are often shaped in people’s minds by culture. Therefore, health care service providers must know what people think about diabetes and its management. Accordingly, information related to diabetes should be disseminated to the masses for effective management of diabetes.
Diabetes as a global health emergency has grown rapidly in the 21st century.1 Around 537 million people have diabetes in 2021 globally. By 2030, this number is projected to reach 643 million and 783 million by 2045. With 74.2 million people living with diabetes, India ranks second in 2021 after China in diabetes burden. In India, more than 1 million deaths are attributed to diabetes and its related complications.1 Indians tend to have diabetes at an early age, which often leads to rapid progression of chronic vascular complications, thereby increasing the pressure on the already overburdened health care system. Neuropathy, coronary heart diseases, cataracts, retinopathy, cerebrovascular accident, and peripheral vascular disease are the common complications of diabetes in India.2 As a chronic disease, diabetes requires continuous self-management to reduce the risk of complications such as heart attack, kidney failure, stroke, vision impairment, and limb amputation.3 Self-management includes following a strict diet plan, regular exercise, maintaining sound mental health for reasonable glycemic “control,” monitoring blood glucose regularly, and strict adherence to medication.4,5
Evidence suggests that culture determines how chronic diseases such as hypertension and diabetes are interpreted and managed in a particular society by constructing individual perceptions about health and illnesses.6 Cultural adherence concerning diet, exercise, social interaction, commitment to religious beliefs, linguistics differences, low health literacy levels, and beliefs about causation have been widely studied.7-10 Patients’ cultural beliefs can also become a barrier to the effective treatment of illnesses because it shapes patients’ preferences for treatment sources. Misconceptions about diabetes, beliefs related to its cure, reliance on herbal remedies to cure the disease, rituals, and value practices by the community can also influence the management of diabetes.11 These cultural beliefs and practices that determine the behaviors related to self-management of diabetes, however, vary across cultures of different countries. Understanding these cultural beliefs and practices related to diabetes is therefore crucial, especially in the context of the indigenous population, where the prevalence of diabetes is increasing.1 In the Indian context, the prevalence of diabetes among the tribal population is also increasing.12-14 There are hardly any qualitative studies documenting the beliefs and misconceptions about diabetes from the state of Meghalaya, one with a high percentage of the tribal population and where matriliny is practiced.
In India, the tribal population constitutes 75% of the total population of the northeastern region of the country.15 The term tribals, used by the constitution of India, refers to the original inhabitants of a place, whereas the United Nations refers to them as indigenous populations. Meghalaya, 1 of the 8 northeastern states, is inhabited by 3 major tribes, the Khasis, Jaintias, and the Garos. Like any other northeastern state, low socioeconomic development in Meghalaya results in vast inequality and poverty. There is no growth in the information technology industry, manufacturing industry, or any other economic development the rest of the country is experiencing.16 Industrialization is almost absent, and a large proportion of the population depends on agriculture for their livelihood.15 The natural environment of Meghalaya, having rich flora and fauna, automatically influences people’s lives, especially regarding their unique food habits. Rice, meat, potatoes, and other vegetables and fruits grown locally are the staple food of the people in Meghalaya. However, using their indigenous knowledge, the Khasi and the Jaintia tribes also made different types of rice-based food items locally called by different names based on the methods they are prepared.17 These traditional snacks are prepared from rice and contain rich calories and carbohydrates but less fat, fiber, and protein. Increased consumption of rice and other carbohydrate-rich food is usually attributed to a higher risk of diabetes.18 People in Meghalaya have used indigenous wild plants as food and medicine for centuries.17,19 Like any other tribal community, they are closely associated with nature. Studies have been conducted on their knowledge and utilization of medicinal plants for many illnesses, including locally available herbs to reduce blood glucose levels.20,21 People in the state also regularly consume smokeless tobacco as kwai (betel and betel leaf applied with lime), a part of the culture to socialize with others. According to the Global Adult Tobacco Survey-2 (2016-2017), the percentage of men and women who smoke and/or use smokeless tobacco was 59.8% and 34.2%, respectively.22 This practice may be a risk factor for many chronic diseases, especially cancer.
The major tribes of Meghalaya are known to follow a matrilineal culture. Although limited studies have been conducted to understand how the culture of matriliny impacts women’s health,23 almost no studies link culture and health. Like any other indigenous population, tribals in Meghalaya also have different beliefs regarding supernatural forces causing illnesses. For instance, cancer is caused due to kynbat, and it can only be treated by the traditional healers who provide the “dawai kynbat.” In Meghalaya, traditional healers from the Khasi and the Garo tribes provide substantial treatment services apart from health care services provided by the government, especially in rural areas. This is authorized by an act passed by the governing body known as Khasi Hills Autonomous District Council (KHADC) and was affirmed by the United Nations General Assembly on indigenous peoples’ rights to their traditional medicine system.24 KHADCs function per the provisions of the Sixth Schedule of the Constitution of India and is empowered to make laws related to land, unreserved forest, primary school education, market, appointments or succession of chiefs and headmen, and others.25
Limited studies have documented the interlinkages of culture with health in Meghalaya. Furthermore, very few studies have explored cultural beliefs and practices that influence the self-management of diabetes. Therefore, the purpose of the present study was to explore the cultural beliefs and practices of the Pnar tribe in terms of their selfmanagement of diabetes. People inhabiting the central region of West Jaintia Hills are called “Pnars” by people who reside in the southern and northern regions. However, the “Pnars” called the ones inhabiting southern and northern regions “Wars” and “Bhois.” The Pnars, Wars, and the Bhois are collectively known as “Jaintias” or “Syntengs.”26
The present qualitative study aims to provide an account of cultural beliefs and practices related to selfmanagement of diabetes among Pnar women. The Institute Human Ethics Committee, Indian Institute of Technology Guwahati, granted ethics approval for the study (Reference No. IHEC/2022/DP/4). The district medical and health officer of West Jaintia Hills District granted permission to conduct fieldwork at different levels of public health facilities. The authors employed an ethnographic approach to achieve the purpose of the study. The main aim of ethnography is to study and describe a society’s way of life or culture in terms of people’s behaviors, attitudes, beliefs, understanding, and values.27
The design for the study is qualitative. Ethnography, which is a qualitative method for collecting data to understand a culture better, is adopted. In ethnography, data were collected by immersing oneself in observations and interviews. Furthermore, data were analyzed using thematic analysis to draw conclusions about how the Pnar tribe self-manages diabetes. Ethnography is an important approach in sociological and anthropological research whose main objective is to study human observations in their natural setting.27 Ethnography involves systematically applying a range of methods to understand people’s everyday lives without compromising its scientific rigor.28
During fieldwork, observations were made at people’s houses in terms of their daily activities, the food they eat, and their workplaces, such as the market and agricultural fields. Interactions of women with frontline health care workers were also observed. The detailed observations were documented as field notes and later analyzed to augment the interview findings.
The study was conducted across 20 villages of Thadlaskein rural block in West Jaintia Hills District, Meghalaya, India. West Jaintia Hills District has a total population of 270 352, residing across 3 blocks or subdistricts. With a total population of 137 939, Thadlaskein Block has the largest population in the West Jaintia Hills District.29 The Pnar tribe constitutes a significant proportion of the population in the district (78.17%).29
Fieldwork was carried out for almost 1 year, between April 2022 and January 2023. During the first phase, ethnographic observations were conducted at public health facilities, and these include 12 health and wellness centers (HWCs), 1 primary health center (PHC), 1 community health center (CHC), and the district hospital. In the second phase, ethnographic observations and conversations were conducted in the community and the participants’ homes through home visits.
Participants were identified from the district hospital and PHC with the help of nurses, doctors, and medicine specialists. At the village level, participants were recruited with the help of frontline workers at HWCs, such as midlevel health care providers, auxiliary nurse midwives, and accredited social health activists (ASHAs). Participants were identified using purposive sampling. Purposive sampling is one of the sampling approaches adopted in ethnography.30 The inclusion criteria were women medically diagnosed and living with diabetes for 1 year or more. The first author collected contact details of eligible women and conducted interviews after appointments at their homes. Given the fact that AM, the first author, belongs to the Pnar tribe, it is much easier for her to build rapport and communicate with the participants. Both authors developed the data collection tool in the English language. Around 60 women living with diabetes participated in the present study.
In-depth interviews, observations, and documentation of field notes were the methods of data collection used. An in-depth interview guide was used for conducting interviews. It included questions on the sociodemographic characteristics of participants, their beliefs and general knowledge about diabetes, and its self-management in terms of diet, exercise, and medications. The authors developed the interview guide in English but translated it into the Pnar language while collecting the data. In-depth interviews lasted between 45 and 60 minutes and were audio recorded. Before starting the interview, the purpose of the study was explained to them, and verbal consent was taken. The confidentiality of the participants was maintained throughout the process of the study. Pseudonyms were used in the article to protect the identity of the participants.
Field notes documented from observations include those related to participants’ dietary habits, medications, their daily activity, and home remedies used to bring down their blood glucose levels. Other observation includes the environment where they live and how and where they go for follow-up of diabetes. Observation as part of data collection includes observing the people’s behavior in their natural habitat and workplace. Interviews include communicating with them in their place of work, accessible to the researchers, such as tea stalls, agricultural fields, or houses.31 The data were gathered as part of doctoral research work. The data can be made accessible by the authors because they are kept within their custody.
The recorded interviews were transcribed verbatim and later translated into English. The translated interview transcripts were imported to NVivo version 12, and a detailed thematic analysis was conducted. Initially, the transcripts were coded using inductive coding, the primary coding technique to analyze qualitative data, particularly in exploratory research.32 Similar codes were grouped into different categories or subthemes. Similar categories are then grouped into different themes. The themes that emerged from the study are discussed in the results of the present study. Table 1 summarizes themes and subthemes emerging from the field data. Thematic analysis was carried out in line with the 6-step process identified by Kiger and Varpio,33 as shown in Figure 1. These 6 steps include “familiarization with the data, generation of initial codes, identification of themes, reviewing of themes, defining and naming themes, and producing the paper.”
To ensure the rigorousness of the research, both researchers meet regularly and discuss the conceptualization of the study, the data collection process, and common themes identified by the researchers. The study was conducted using multiple methods of data collection. Findings from participant observations and in-depth interviews were triangulated with field notes to ensure the credibility of the research. Further fieldwork was carried out for a longer duration, and the first author, AM, is a native of West Jaintia Hills District and belongs to the Pnar tribe. To avoid biases and maintain the objectivity of the study, transcripts were critically reviewed by both authors regularly. The context in which the study was carried out was discussed briefly, and the participants’ background characteristics have also been described to ensure the transferability of the study. The trustworthiness or rigorousness of the study is crucial to ensure its reliability and validity.34 The second author monitored and supervised the study to ensure the findings were as accurate and true as it is in reality. Furthermore, the method adopted, ethnography, which is important in understanding culture, is appropriate in answering the research questions asked, thus ensuring the validity of the study.34,35 At the end of fieldwork and after data analysis, both authors discussed the findings thoroughly to ensure that all required information had been collected. Member checks or verification of information with participants was also carried out.34
Data are managed to ensure accessibility to both researchers and to maintain the confidentiality of participants. Audiotapes are stored and kept in the safe custody of the first author, AM. Hardbound copies of all transcriptions are available with both researchers for ease of accessibility in case verifying information is required. All the data collected are not accessible to a third person to maintain the confidentiality of participants.36
Table 2 presents the participants’ background characteristics. Most participants (n = 23) were in the age group of 51 to 60 years old, and about 23 were widows. Around 30 of them did not receive any formal education. Almost all participants worked in the informal sector, such as agricultural and casual laborers. Majority of them were Christians. More than half of the participants (n = 37) were from below-poverty-line households, and more than half (n = 38) had lived with diabetes between 1 to 5 years.
Among the Pnar community, diabetes is known as kjut chini. Although chini means sugar, kjut encompasses different meanings, such as pain, illness, sickness, and diseases. Thus, in villages, people perceived that diabetes is caused due to consumption of too much sugar, given its local name, kjut chini.
As a part of dietary management, most participants said they must avoid taking all vegetables grown underground, such as potatoes, carrots, radishes, and beetroot. Although they can restrict themselves from taking all these vegetables completely, switching from rice to atta (a round flat bread made of wheat flour) is hard. Most participants also believe that eating bitter herbs and vegetables can reduce blood glucose. These bitter herbs and vegetables are grown locally, such as karela (bitter gourd), sohpdok kthang (small green and bitter tomato), and other herbs grown naturally in the wild known as iarem (green leafy vegetables available in the wild). Participants attributed this belief about diet to the advice they received from friends, families, and relatives. They even reported that it is their doctor who gave them the advice not to eat all the foods that are grown underground.
Horlicks is good for diabetes. Participants have limited knowledge about dietary management of diabetes. There is a misconception in the community that when one is sick and has diabetes, they should take “Horlicks,” a maltbased energy drink, without sugar. When the person is sick, their appetite will be low, and in such cases, people in the community take Horlicks to gain energy. For instance, Mrs Ioobiang, a 57-year-old woman diagnosed with diabetes in 2021 who is also suffering from anemia, shared:
I cannot eat properly; I am just eating forcefully. As the doctor told me I was anemic, I used to drink milk along with Horlicks. I have completed drinking about 50 bottles of Horlicks. I do not know whether it is good or bad, but I used to take it without sugar. When one is sick, people in the village are advised to buy Horlicks, and when someone has sugar, they will say, “Have Horlicks.”
Walking barefoot on pebbles and grasses is good for health. Participants considered household chores as one form of exercise, although they go for morning walks in their free time. Almost all participants shared that when they go for a morning walk and do exercise every morning, they used to go barefoot. The belief is that walking on pebbles or grasses with early morning dew will help them in relieving their symptoms of diabetes. Participants shared that their doctors advised them to walk barefoot because it would help them get relief from their symptoms of diabetes. Mrs Bella, a 71-year-old who had lived with diabetes for 15 years, shared:
I used to take a walk every morning after I had put on the rice in the rice cooker for our lunch. I used to walk barefoot. The doctor from dkhar [Silchar, which is the headquarters of Cachar District; Assam has a sizeable population of the Khasi and Jaintia tribe, and historically, they were the original settlers of the region.37 ] taught me. He said when I go to Pnar [Jaintia Hills], as there is dew on the grasses early morning so I should walk on them. Before walking, I used to pick up all the broken pieces of glass bottles one by one to avoid getting injured. I cannot wear slippers as people said those plastic slippers are not good for those who have BP, and the leather slipper is also not good for us. They said that these plastic slippers increase BP. Earlier, this place used to be a place where people would sit and drink alcohol, so there are lots of broken pieces of glass bottles. So, I have to be very careful while taking a walk.
Mrs Bella lived in an isolated area away from other people’s houses and far from the main road. Because the place is isolated and located near the forest, most men from the village use the place to drink alcohol after purchasing from the stores.
Mrs Will, 53 years old, also narrated similar practices of walking barefoot. She shared:
I used to go for a walk barefoot. The doctor only told me to walk barefoot and not to wear slippers while walking on the pebbles and sand. I feel so good and comfortable when I step on pebbles barefoot. If I wear slippers, my feet will become warmer and feel burning.
Prolonged use of oral hypoglycemic drugs can affect the kidneys. There were many fears and misconceptions related to antidiabetic medicine in the community. These fears and misconceptions among participants were due to their observations about their family members who suffered from kidney failure and blurred vision. For them, complications of diabetes are considered to be the side effects of oral hypoglycemic drugs. For instance, Mrs Amy, a 44-yearold primary school teacher, shared:
I stopped taking allopathic medicine in 2020 because I feared it would spoil my kidney as it did for my mother. My mother has also suffered from diabetes since 2018, but her kidney is now damaged due to the medicines. So, since 2019, she has had to undergo dialysis every alternate day. Now, I am taking Ayurvedic medicine, which I purchased based on the advice of my friends who sell these medicines.
Similarly, Mrs Mary, a 58-year-old primary school teacher, shared:
As I was scared to take allopathic medicine longer, I shifted to an Ayurvedic doctor. I told her I feared taking allopathic medicine, so I requested she treat me with Ayurvedic medicine. I have heard people say that this allopathic medicine will affect the kidneys if we take it for long.
Diabetes is an episodic or short-term illness. Around 13 participants, especially those newly diagnosed with diabetes, perceived diabetes to be a short-term or episodic illness. Participants believe that when they do not experience symptoms anymore, it means that sugar is not there. However, when they experience symptoms, it means that sugar has appeared again. Therefore, they only go for follow-up when these episodes of symptoms arise. Mrs Sheryl, a 65-year-old widow who had retired from government primary school as a teacher, shared:
I only go for follow-up when I experience symptoms such as blurring of vision, a feeling of ngung ngung ngeng ngeng [dizziness] when I feel ngun ngun [heaviness]. Sometimes, sugar is there, blood pressure is there, and sometimes it is not there.
Diabetes can be cured through herbal medicine. Participants’ beliefs that diabetes can be cured could affect selfmanagement of diabetes because diabetes is a chronic disease that requires continuous long-term management. Few participants believe that diabetes can be cured through herbal medication. For instance, Mrs Linda, a 53-yearold farmer diagnosed with diabetes in 2019, shared:
People in our village shared that in Umroi [located in Ri Bhoi district, Meghalaya], someone provides herbal sugar treatment. That sugar medicine is very good. You know there is someone who gets cured after taking the herbal treatment, my friend’s husband who lives in this village only, he is cured now. My paternal aunt also told me to go there so that I would get cured.
In the present study, participants resort to numerous home or herbal remedies such as neem leaves, gooseberry, passion fruit leaves, squash, bitter gourd, wild vegetables, and fruits known locally as iarem, sama (dal like and very salty fruit). The information about the types of home remedies for blood glucose spread through word of mouth. Utilization of these home or herbal remedies depends on their seasonal availability. For example, gooseberry is available only during the winter season. Most participants (n = 23) have tried at least 1 remedy to reduce their blood glucose levels. Some found it helpful and continued, whereas others did not. Thus, their experiences vary. For instance, Mrs Cynthia, 40-year-old, and was diagnosed with diabetes in 2022, shared:
Sometimes, when I feel like my head is dizzy, I pluck neem leaves at the back of our house, cook them with water, and then drink the juice. I found it helpful, especially when I feel very dizzy and do not know if it was due to BP [blood pressure] or sugar. I used to drink half a glass in the morning, half in the daytime, and half again at night—after which I feel light. My friend who sells vegetables at Ummulong told me to drink sama. Then I told her it is enough I did not want to do foolish things. You never know, sama could be harmful to me, so I did not take it. But with Neem, there is some change, unlike before.
The narratives shared by participants in the present study showed a mix of experiences in using sama to bring down their blood glucose levels. Some found it is causing acidity, while others found it helpful in relieving their symptoms. As shared by participants, sama is usually sold in the market in powdered form after it is mixed with salt and chili powder. It is usually consumed as a snack. However, people with diabetes realize that it helps in reducing their blood glucose levels. According to the participants, this is how sama became medicine for reducing blood glucose levels, and this information is spread in the community through khana patein (word of mouth or hearsay). Similar is the case with passion fruit leaf juice and other home remedies.
Medicines or treatment alternatives other than Western biomedicine are considered complementary and alternative medicine (CAM).38 Study villages adjacent to the National Highway 6 are well connected, making it more accessible to the CAM companies’ agents to visit people’s houses and advertise their products, unlike in remote villages. People were counseled and convinced to buy their products at their homes. In most cases, participants were convinced to buy these products. For instance, Mrs Lari, 62 years old, shared how the agent communicated to her about the benefits of their medicines. She was diagnosed with diabetes in 2014. She narrated:
I used to buy and drink those company medicines, as they came to our house to sell them. I have this one [referring to Triphala Juice—an Ayurvedic drink claiming to reduce weight, increase immunity, be effective in hyperacidity, and act as an anti-inflammatory agent], which is helping me a lot. It costs around [Indian national rupee] 500 (USD$6.04). My acidity also reduced when I started taking this. Whenever they came, I used to say no, but still, they would try to convince me by saying things like “It is good for you as you are fat, let us explain its benefits to you, like that so many things they used to say.” I did not even understand how they could convince me constantly, so I bought their medicine.
Mrs Lily, a 51-year-old ASHA of Wahiajer village, shared:
If we listen to them [company agent selling the complementary medicine], we will only spend our money buying their medicines. Many of them used to come to our village; they told us it is Ayurvedic medicine, but I used to ignore them. They cleverly explained the medicine. They would say, “These medicines are good for health. What if you have sugar, BP, and fats in your liver?” Like that, they tried to convince us to believe them. Those medicines are mostly made of fruits such as grapes, pomegranates, etc.
Due to the intensive marketing of CAM, people in the community were convinced to purchase these products and take them alongside other allopathic medicines for diabetes. For instance, Orimon, a 65-year-old who had undergone surgery for both her eyes, also purchased medicine from the Magnesa company’s agent. She shared:
Besides the allopathic sugar medicine, which [Dr] Mark [an allopathic doctor] gave me, I also bought these medicines from Magnesa company. They came to our house to sell these medicines for my eyes and sugar. The medicine cost Rs. 1100 each, and I have taken 4 bottles. I am taking half of the allopathic medicine and half of the company medicine daily. I used to take the one from Dr Mark in the morning, whereas the one from the company I take in the morning at night.
There was also a misconception regarding these supplement drinks sold by the company’s agent. For Mrs Lanalang, a 68-year-old widow, these supplement drinks are considered antidiabetic medicine. The Maangoal Ayurveda Energy Health Drink is a juice-like drink that My Recharge company produces. According to her, it is sugar medicine. She narrated:
My brother, who also has a sugar disease, used to take this medicine. My family members then advised me to take it, too, as my symptoms were similar to my brother’s. I had already taken it even before I was diagnosed with diabetes. My family advised me to try drinking it. They said what if sugar is affecting me. Since this medicine is iatoh [matches] with me as it provides relief from the symptoms, they are right that it might be due to sugar. They advised me to mix 2 spoons in 1 glass of warm water.
Most participants knew that when they have diabetes, they need to protect themselves from getting wounded. However, when it comes to wound care, women adopt different practices based on their beliefs about its cure. One such practice is the application of nail polish to wounds. For instance, Mrs Lucy, a 63-year-old widow, shared:
Once, while I went to catch fish in the river, a broken glass cut my feet. My daughter told me to take tek [a nail polish] and apply it to the wound. When I applied the nail polish, I got a burning sensation. After 2 days, the size of the wound decreased. I applied tek, a black one I had purchased, and after applying it, the wound just disappeared.
Although it was fortunate for Mrs Lucy to recover from her wound by applying nail polish, this is not the case for Prom, a 50-year-old dependent on children. Applying nail polish worsened the condition of her wound, and she suffered from a foot ulcer. Her 24-year-old daughter, who is her primary caregiver, Ms Heini, narrated:
It was in November 2020, but I cannot recall the date that a sharp object pricked her while she was going for a morning walk, and she informed us about it. I told her to apply nail polish on the scratch, so she applied and felt better. However, a few days later, the scratch led to pain and swelling in her left limb. The wound gradually increased, and to cure the wound, she started taking medicine from an informal provider living in a village next to ours. But it was not helping her. The size of the wound kept increasing, and she was having much pain due to the swelling.
It was observed that the wound in her left foot had also extended to her leg, her skin was peeled off, and the muscle also became visible. Lay method of wound treatment can thus harm women, especially when they are unaware of the complications it could lead to.
The society in Meghalaya follows a matrilineal culture, and women are actively engaged in economic activities. Participants who work as small traders said they used to eat with their friends in the market and share their packed lunch. Thus, when they are with friends, it is difficult for them to resist the food items they should avoid eating. The other challenge of being in the market as part of their occupation is difficulty following the dietary regimen of eating small and frequent meals. At times, they even missed their food timings. For instance, Mrs Ristina, 67-yearold, another small trader, shared:
You see, in the market, as I have friends with whom I used to have lunch together so I would ask them to give me 1 or 2 pieces of potato. Whatever we cooked and packed as lunch for the market, we used to share. It was always like that. We used to taste each other’s food. That is how I eat the food and meat the doctor advised me not to eat. Thus, my sugar increased and became high. At home, I used to have lunch around 9 am, but when we were busy in the market, we used to eat even around 12 or 1 pm. There would often be customers buying vegetables, and I would be busy. There is no proper time at all. It is only when I am at home that I can follow the proper timing for having my food.
About 10 participants were advised to switch from rice to round flat bread made of wheat flour, or atta, and perceived it challenging to follow and practice. According to them, atta will not satisfy their hunger, and their “acidity will increase” if they eat atta. The cultural practice of eating rice thrice a day by the Pnar community is a barrier to following the doctor’s dietary advice. Mrs Nini, a 42-year-old small shopkeeper selling chicken, shared:
Since we are olden people so we cannot stop eating rice. At night, I am eating rice only. When I stopped eating rice for 1 week, like the doctor said, it started poking me here [pointing toward her chest] because of that sugar. It is biting me here in the chest. The way it bites my chest is difficult to tolerate, it is always biting here. That is why I started eating ja sngi [a common practice by the Pnar community where people usually have tea with rice at around 1 pm].
For Mrs Lari, a 63-year-old widow, atta will worsen her gastritis. She shared:
I cannot eat atta because my acidity will increase. But when my sugar is very high, I have no choice but to eat atta. I always used to eat 3 atta and then have some rice during lunch and dinner. If I do not eat rice and atta, my acid will increase.
In villages, gastritis is usually known as acid, and some participants reported that eating atta instead of rice increases acidity.
The majority of the population in Meghalaya practice Christianity. Few of them, however, remain in the indigenous tribal religion, which also largely believes in God as the creator. Participants who understood the chronic nature of diabetes had no other choice but to cope with the illness while at the same time having faith that God would provide them cure. After recovering from a serious illness, they shared that it is due to “God’s grace” that healed them. For instance, Mrs Nini, a 42-year-old Christian who got infected with COVID-19 during the second wave, shared:
I was admitted to an isolation hospital, but the doctors and I forgot I had diabetes. When I became critical, I realized I have diabetes and informed the doctors. By the time I informed the doctors, my RBS was 600! I was then put under insulin treatment, and the nurse monitored my RBS regularly. Nonetheless, due to my goodness in helping and praying for other patients as I pity them, God helped me recover from my illness and prevented me from complications of diabetes and death. I do not even pay attention to my illness. From that, only God feels pity for me. On the day I was discharged from the hospital, my sugar reduced to 300. But I still feel that I will recover, meaning I trust God. Only God can heal me.
Similarly, other participants, such as Mrs Mary, 58 years old, a Christian, also believe that her diabetes will get cured one day. She said “My diabetes will go away because earlier, it was so high. Now it has decreased. I believe that the blood of Jesus Christ will completely heal me. It will go away completely.”
Mrs Ioobiang, 57 years old, shared that she is not scared of the complications of diabetes because she has already committed herself to God. She said:
For now, I am not afraid anymore. Whatever happens to me, I committed it to the hands of the one above. I am not feeling scared or nervous anymore. I am taking sugar medicine and other medicines as well, but it depends on the will of the one above. As long as I can work, I will work, but if I cannot, then what will I do, listen, I am not scared anymore.
Health care providers’ perspectives. Ethnographic fieldwork was also conducted in health facilities, and interviews with health care providers were carried out. An attempt was made to understand the type of diabetes selfmanagement education that was provided to patients on a regular basis. However, the study suggests a lack of dietitians and counselors, especially at public health facilities. Doctors shared numerous challenges when it came to educating patients about diabetes self-management. For instance, Dr Mark, a 32-year-old allopathic doctor, shared: “Whatever information we provided to patients is whitewashed the moment they reached home by the information they received from their friends, neighbors, or relatives.” Health officials shared similar issues when it comes to providing diabetes self-management education. They called it a “clash of information” between what they gave and what patients received from their community.
This is one of the first studies in the context of Meghalaya to identify various cultural beliefs and practices that influence self-management behaviors for diabetes. These practices have negatively impacted the self-management of diabetes among the Pnar women living with diabetes. Four major themes emerged from the study: misconceptions about diabetes and its management, cultural beliefs and practices related to the treatment of diabetes, the influence of culture on dietary management, and the influence of religion in coping with diabetes. Various subthemes have also been identified and discussed based on these themes in the present study.
Misconceptions about diabetes include diabetes being a short-term or episodic illness, diabetes can be cured through herbal medicines, and prolonged use of oral hypoglycemic drugs can affect the kidney. Concerning dietary management, women consider Horlicks good for diabetes, bitter vegetables and fruits can help lower blood glucose, and “all vegetables grown underground needs to be avoided.” Findings on misconceptions correspond to the cross-sectional study conducted by Patil et al39 in Pondicherry, India. The misconceptions were attributed to the lack of knowledge and awareness about diabetes among the people. Walking barefoot is good for health and prolonged consumption of oral hypoglycemic drugs can affect the kidney were the other misconceptions identified. In a recent ethnographic study among Javanese patients with diabetes by Sari et al40 to explore their cultural beliefs and practices, similar findings were also reported. Misconceptions are barriers to disease management, often shaped in people’s minds by culture. Therefore, health care service providers must also know what people think about diabetes. These misconceptions often act as a barrier to the self-management of diabetes and prevent people from seeking medical care.39
In consonance with the study conducted by Lai et al41 in Taiwan, the present study also found that participants fear that their kidneys will be damaged if they take allopathic antidiabetic drugs. Few participants also believed that diabetes could be cured through herbal remedies and that home remedies could help reduce blood glucose levels. The use of vegetables as home remedies to bring down blood glucose levels and relieve symptoms was also been reported in the study conducted by Wah Oo et al42 in Myanmar. Similarly, in their study to find the common herbs used by the village people of Kerala for curing diabetes mellitus, Jasna et al43 found guava leaf, fenugreek, neem, gooseberry, curry leaves, ladies’ finger, leaves of passion fruit, turmeric, ginger, and spinach were the common herbs reported to be used by the people. An ethnographic study conducted by Abdulrehman et al11 in coastal Kenya found that there was a pervasive use of nonbiomedical remedies, such as aloe vera and papaya leaves. The study also found out that there was fear and mistrust of medications (biomedical therapies) by perceiving that the medicines are fake and, once taken, must be taken every day and that one should only stick to dietary restrictions.11 Findings from the study conducted across northeastern India showed that numerous herbal plants were used to treat short-term and long-term illnesses.44-47 The main reasons for using traditional medicine are its easy availability, accessibility, and cost-effectiveness, especially in rural areas.48 It might also be due to its cheapness, trust, or compulsion under poverty, given the geographical isolation and distant location of public health facilities. Herbal therapies also treat diabetes and its comorbidities.45,47,48 Pandeya et al,49 Sidhu and Thakur,50 and Bhat and Mulgund,51 who explored different states of India and the traditional use of plants in the treatment of diabetes, proposed traditional herbal drug alternatives for people who cannot afford to purchase the conventional drugs. The use of herbs has been noted historically across cultures and is an integral part of modern civilization’s development.52 Incorrect identification and consumption of herbs, such as inedible plant parts, could lead to poisoning or allergenic reactions. Not all herbal drugs are safe and need to be taken for a longer duration. Therefore, the treatment of diabetes through herbal drugs needs lots of patience. Nonetheless, no drug can completely cure diabetes, but the primary aim is to reduce blood glucose levels to reduce the risk of complications.52
Besides home remedies and herbal medications, women reported using nutritional supplements manufactured by companies such as Magnessa and My Recharge Ayurveda. This is due to the excessive marketing of these products in a few villages well connected to towns. Treatment beyond the standard biomedical practices, known as CAM, has been used globally. Whereas alternative medicine refers to those practices adopted instead of standard biomedicine, complementary treatments are considered supplemental.38 Across the globe, people suffering from diabetes have adopted multiple therapies based on anecdotal evidence, folklore, and a new belief system.38 Cultural heritage, natural environment, and the material conditions in which patients live also influence their therapy choices.38 In recent years, natural medicine has been opted for by many people for the treatment of diabetes due to its fewer side effects.43 Few women in the present study consider these supplementary treatments “sugar medicine.” These misconceptions need to be clarified by the health care service providers working closely with the community for effective management of diabetes.
People living with diabetes are more likely to be in stress, given the long-term nature of the disease. Most participants reported submitting themselves to God and praying for healing to cope with stress. They believed that only God could heal them, which gave them the courage to live with diabetes. Findings from other studies support this finding on religiosity and spirituality. Religiosity and spirituality act as coping mechanisms among people living with diabetes because it has been found that people with high religiosity could lower their blood glucose levels but not those with low religiosity.40 In their ethnographic study in Myanmar, Wah Oo et al42 reported similar findings where spiritual and religious beliefs act as coping mechanisms for diabetes. However, van Houtum53 argues that religion can dictate a lifestyle or habits that harm an individual’s health or complicate existing illnesses. This is by not taking active measures or interventions to reduce their blood glucose levels, possibly due to numerous barriers. Therefore, women have no choice and shared that they leave everything in God’s hands. Cultural misconceptions, dietary practices, fatalism, and religious practices negatively impacted the management of diabetes.54
The present study reveals that the Pnar tribe adopts different therapies for reducing their blood glucose levels specific to their environment. It also highlights how cultural beliefs impacted the self-management of diabetes among Pnar women. The knowledge and understanding of diabetes in the community are mainly based on the discussions among friends, relatives, or neighbors, which, in the words of Kleinman,55 is known as the “popular sector.” Adequate information related to risk factors, signs, and symptoms of diabetes and its management is still lacking in the community. There is thus an urgent need from the health system side to address these challenges among people living with diabetes in rural and remote villages. Women reported that being in the market is a barrier to following dietary advice. In such cases, counseling and measures tailoring women’s needs should be developed accordingly. Health education and one-to-one counseling by well-trained frontline workers are crucial for good diabetes outcomes. Unless these barriers are broken down, people in villages with low levels of education and belonging to low-income groups are more likely to suffer from diabetes complications. Misconceptions, therefore, need to be addressed through proper health education and awareness generation. Brief information on alternative treatments that health care providers might consider to reeducate individuals to manage type 2 diabetes better is summarized in Table 3.
The scope of the study is to understand the cultural beliefs and practices related to self-management of diabetes behaviors, specifically among Pnar women. Although findings from the present study cannot be generalized, it reveals the misconceptions and cultural practices related to diabetes among the Pnar tribes in West Jaintia Hills of Meghalaya. Because the Pnars constitute the major proportion of the population in West Jaintia Hills and their culture is similar to that of the other tribes and the Khasi, the study at least represents the culture of people living in Meghalaya. As it is, culture varies across different countries and groups of populations. Therefore, the study provides insight to policymakers and health planners in tailoring workable strategies specific to the context of Meghalaya. The limitation of the study is the fact that the participants are women. Therefore, we could not provide insight from the perspectives of men. This is because during the identification process of participants, the list of names shared by health care service providers happened to be primarily women. When asked if men do not suffer from diabetes, health officials responded, “Health-seeking behavior of men is very poor in Meghalaya.” The health information systems related to diabetes also show that the number of women who attended health facilities and got diagnosed with diabetes was many times higher than that of men. Despite these limitations, the present study adds to the gaps in the existing literature related to health in general and diabetes in particular in the most underresearched areas of northeast India.
We thank the mission director of National Health Mission, Meghalaya, Shri. Ramkumar S. Indian Administrative Service (IAS) for permitting us to conduct the study. We also thank the district medical and health officer and the district nodal officer of the National Program for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases, and Stroke, West Jaintia Hills District, for their support and cooperation. Visiting the villages was possible because of the permission granted by the village headmen; our gratitude goes to them as well. We are indebted to the health care providers and the respondents from the community for their priceless contributions. The study is possible because of the cooperation and willingness of women to share their experiences with diabetes.
Alacrity Muksor https://orcid.org/0009-0007-3549-7159
From Department of Humanities and Social Sciences, Indian Institute of Technology Guwahati, Assam, India (Miss Muksor, Dr Parmar).
Corresponding Author:Alacrity Muksor, Development Studies, Research Scholar Laboratory One, Department of Humanities and Social Sciences, Indian Institute of Technology Guwahati, Core 3 Academic Complex, Guwahati, Assam 781039, India. Emails: alacritymuksor@iitg.ac.in; alacrity6@icloud.com