Baseline socio-demographic, behavioural and clinical characteristics of diabetics and hypertensive by their biological control status is presented in Table 1. Overall, 58.70% hypertensive and 29.03% diabetics achieved biological control level. 79.3% of long term diabetics (more than 10 years of history) were not under biological control, while 61.8% among recently diagnosed diabetics (less than five years) were under control. Similarly, diabetics with other co-morbidities had poor control levels than those without (85.3% vs. 68.3%). In contrast, among the hypertensive, no such associations are observed. Obesity remains one of the major risk factors; 72.2% of obese diabetics and 47.3% obese hypertensive did not achieve good control. We found no association between alcohol consumption and blood sugar levels; however, 57.3% of hypertensive who consumed alcohol did not achieve good blood pressure control. Apart from clinical and behavioural factors, socio-economic factors like caste and work status showed some association with control status. While 70.7% SC/STs had their blood pressure under control, it was 56.3% among other groups. No such caste association was seen amongst the diabetic though. Conversely, diabetics with more years of education had better blood sugar control, but no such association was seen among hypertensive. In terms of employment status, 51.3% of hypertensive who were engaged in any paid job/remunerative work had their blood pressure under control as compared to 61.85% who were not employed. No such difference was evident among people with diabetes.
Tables 2 and 3 presents the effect of socio-demographic, behavioural and clinical indicators on the control of diabetes (HbA1c levels) and blood pressure (SBP/DBP levels) respectively. 217 diabetics and 247 hypertensives were part of the final regression model. The regression results revealed that with one unit increase in age, a diabetic patient was less likely to have poor control by a significant odds of 0.96 (CI: 0.926-0.996) than those of a younger diabetic. SC-ST group had significantly lesser odds of uncontrolled SBP/DBP levels compared to other backward caste or general caste patients (0.48, CI: 0.222-1.059). In addition to this, clinical factors including duration of onset of disease, presence of co-morbidity, and BMI status were estimated. Duration of disease was directly proportional to poor glycaemic control among diabetics; while longer duration such as more than 10 years duration (2.54, CI: 1.085-5.964) and 5-10 years duration (2.17, CI: 0.887-5.309) had significantly higher odds of being in poor control compared to recently diagnosed diabetics (less than 5 years). Diabetics with other chronic conditions were about three times (CI: 1.145-8.311) more likely to have poorly controlled blood sugar compared to those without other chronic conditions. People consuming tobacco products whether smoke or smokeless had a higher likelihood (8.32, CI: 2.147-32.282) of having poor control similarly people categorised as overweight or obese were at higher risk (2.91, CI: 1.526-5.550) for uncontrolled SBP/DBP levels compared to those with normal weight. Consumption of alcohol increased the odds for uncontrolled SBP/DBP levels by 2.62 times (CI: 0.975-7.079).
Results from qualitative study
Patients who participated in the qualitative interviews (n=16) included 10 patients with poor control and 6 with good control levels of hypertension/diabetes. Of the total 16 participants, 8 were male and 8 were female. Three respondents were between the age group 40-50 years while six were between 51-60 years and the remaining were 60 and above years old. Nine respondents had both diabetes and hypertension while 4 had diabetes and 3 had hypertension only. Five patients were having their duration of illness between 5-10 years while others had more than 10 years. Only one patient reported having been diagnosed for the last one year. 10 patients have co-morbid chronic illness, of which six patients had heart-related complications while the remaining had health complications related to kidney and vision.
Barriers to good biological control of hypertension and diabetes
The qualitative study findings pointed out the stress is one of the key barriers for controlled hypertension and diabetes and the narratives of all cases in the study suggested that stressful life events often affect hypertension/diabetes in its exacerbation.
We found that most of the cases were associated with hidden and persistent emotional burdens and worries related to family issues or financial problems. Generally, women were more stressed due to family problems and men due to financial worries. A review of the medical records also revealed that during stressful life events patients experienced a considerable spike in their blood pressure and blood sugar values. Experiences of stress might have led to poor self-care, poor health-seeking behaviour and picking up unhealthy behaviours, such as consumption of alcohol and smoking, which in turn poses a greater risk to develop hypertension & diabetes-related health complications. Mr. Murali recalled how the stress or anxiety due to economic hardship, loneliness and physical injury led to difficulties with self-care, which manifested through an unhealthy diet, less physical activity, or difficulties with taking the medication regularly.
I used to have agricultural land but I sold it to get my daughter married. I have so much debt on me. …I stay away from my family. I still have 4 other family members who depended on me. I had an accident a few years back, since then my spinal cord hurts, …I always feel guilty as I am unable to provide a good life for my family. Here there is no one to talk to. To forget my worries, I just drink alcohol day and night, it is my only friend. I have diabetes for 19 years, I don’t remember when I checked it last. I just take the insulin injections whenever I feel extremely tired (Murlidhar, 53 years, diabetes, not under control).
The following narratives from our study participants Ms. Durgamma and Mr. Rekesh Gowda respectively provide an example of how women become emotionally drained and tend to resort to poor eating habits and irregular medication while men took up smoking and alcohol as a common way to deal with their stress.
“I have faced problems throughout my life, I lost one of my sons, my other son is handicapped, he doesn’t earn…. he and his family are completely dependent on us, and my younger son stays separately married to a girl who often quarrels with us and constantly threatens us for the property. My husband is also retired….So I have to manage within our savings….I have also undergone heart surgery…what else …I am taking medicines…with all these worries how do you expect me to do anything else?”- (Durgamma, Female, 59 years, both diabetes and hypertension, not under control)
“I have both hypertension and diabetes, it was manageable, …I was working in a tire company but in 2008 I lost my job …my blood pressure and blood sugar values shot up…I had a huge debt and no job with two children to take care. My son never supports me, just roams around, daughter is studying in a college and yet to be married….I am 49 years…how can I find a new job…ultimately after struggling a lot I got a job as security guard. I take medicines at times, but I don’t have any time to do exercise… I smoke too much to reduce the stress….my job schedule doesn’t allow me to have food on time and the doctor says my blood pressure, blood sugar levels are still very high….”(Rakesh Gowda, Male, 49 years, both diabetes and hypertension, not under control)
The above narratives clearly show that the behavioural mechanisms through which stressful experiences might affect hypertension or diabetes control are varied and often complex. Irrespective of better knowledge of the disease and awareness of one own disease status or medication, physiological reactions to external stressors may negatively affect hypertension or glycaemic control. Though the mechanisms of poor outcome of stress on diabetes are not very clear but it may lead to difficulties with self-care manifested through less physical activity, poorer diet, or difficulties with taking medication.
Even findings from the study show that most of the patients who came to the UPHC for care and treatment more often discussed their family problems with the counsellor along with the health-related issues. Further, we found that many patients, such as elderly men and women, widowed, retired who were dependent on others faced challenges in disease management due to lack of family and social support. The counsellor emphasized the need to prioritize patients with poor control levels and conduct patient counselling along with the family for better disease management. In addition to clinical counselling, counselling needs with regards to mental health issues existed for most of the patients suggesting for service of dedicated mental health counsellor. Moreover, doctors gave very little time to the patients to explain their concerns regarding the disease and queries on its management.
“ There is no provision of counsellor at the UPHC...I only do all the testing and provide lifestyle advice to the patients. Many patients have family problems or some other financial problems, they start crying in front of me… whatever advice I give them also needs involvement and constant support from their families but it is difficult to expect anything from them….” (Kavya, female counsellor from the intervention program)
Poor lifestyle choices, such as a meager diet, smoking, overuse of alcohol, and lack of physical activity often fuel poor health and further deteriorates the health conditions like diabetes and hypertension. The risk with a poor lifestyle is that it gradually becomes a way of life, and may not look risky in short term but have far-reaching harmful effects in the long term. This study found that various factors were contributing to the poor lifestyle. The below narratives of Mr. Muttu Swamy and Mr. Puttuswamy reflects the common barrier to a healthy diet and it has been a perceived lack of control on eating patterns and preferences which can further be linked to a lack of intrinsic motivation to regulate their eating behavior.
“I know I have sugar (diabetes), I should restrict intake of certain food items, if I wish to eat I will eat and I don't care about anything…. when my family members are not there I put some extra sugar into my coffee, otherwise, they give me low sugar coffee….I like sweets and I will have them” (Mutthu swamy, Male, 69 years, both diabetes and hypertension–not under control)
“Our mind will always be fickle and we can’t stop it completely. Whenever I want to have it (alcohol) I go with my friends and have it….what is wrong in that” (Puttuswamy, Male, 53 years, diabetic, not under control)
Many respondents felt that taking medicine was enough and one need not necessarily follow the diet or any physical activity regimen. Many pointed that doing household work or traveling for work was sufficient to control their blood pressure or sugar levels.
I am doing so much work at home, I start working from 5 in the morning. You can imagine how much time I have to spend cleaning the home and cooking food for 6 people in the family. Where do I have the time to do anything else?? (Shanthi, Female, 41 years, diabetes and hypertension-uncontrolled)
People do so many things like …food restrictions, exercise, walking, gym, yoga and still they take medicine…so how does it make any difference… I feel as long as I am taking medicines on time, nothing else is needed. Household chores are itself too much and there is no need for exercise. Better eat and enjoy everything and just take medicines along with it. (Shanthi, Female, 41 years, diabetes and hypertension-not under control)
I don’t do anything like that, we just need to do some walking ...and that much I think gets covered when I walk to my workplace or go to market... (Shrinivas Acharya, 57 years, diabetic, not under control)
Other factors like the sedentary nature of work, high and frequent consumption of non-vegetarian food, lack of time and space to go out for walking or exercise contributed to a poor lifestyle. Many of the women respondents shared that taking out time from their household duties and also lack space to go out sometimes demotivated them to go out for a walk or to do exercise. In-depth analysis shows that due to lack of space women were hesitant and shy to go into public spaces to exercise. In addition, narratives also suggested that open and safe spaces in the city are also a decisive factor for patient choices to do physical exercise such as walking, running or exercise.
“We practice “gudde mamsa” here...as a result of almost every weekend we eat red meat and it’s a rich preparation...you tell me how can one resist meat when my family and neighbours are enjoying so much of non-veg.” (Prasad, Male, 65 years, both diabetes and hypertension-not under control)
“I work in a sweet shop and I make sweets all day long…for this, I have to sit in one place constantly…I don’t get the time to do any physical activity, I am under medication and eat according to the doctor’s advice, but still, my blood pressure is high…what to do, should I leave my job….” (Hanumane Gowda, Male, 39 years, diabetes, not under control)
“In this neighborhood, we don’t have any parks or footpaths to walk. Walking on the streets between the houses is not comfortable, everywhere there are cars and bikes parked on the streets…moreover, people are driving so badly nowadays… Who will go to a park away from home, who has that much time… I am taking my medicines and I go to work, I think that is enough for me....”( Prasad, Male, 65 years, both diabetes and hypertension-not under control)
Poor health-seeking behaviour
Most of the respondents were taking medicines irregularly leading to poor biological control. Unfolding the reasons for poor adherence were rooted in perceived treatment efficacy, medication beliefs, trust in one’s health care providers, unavailability of medicines at the UPHC, and poor doctor-patient rapport. Mr. Srikanth Acharya’s insulin-taking practices reflect the poor patient understanding of the disease and its management.
“I keep the insulin in one glass of water because we don’t have a refrigerator at my home. whenever I go to work, … I just carry the insulin in my pocket. After having my food outside I will just inject the insulin myself and complete my work and return home” (Shrikant Acharya, Male, 57 years, diabetic, not under control).
Since hypertension and diabetes are chronic diseases that require life-long treatment and management, many patients shared that they often feel disappointed and annoyed about maintaining a strict regimen leading to dietary negligence and improper medication. Also, because of limited knowledge and understanding of the disease and medications, few respondents reported taking medicine only when they felt the need.
“I come to know of my higher biological levels whenever I feel tired and then I take one tablet extra and I will feel better” (Mutthuswamyi, Male, 69 years, both diabetes and hypertension, not under control)
“Help me understand what’s going on with me…what do the tests mean, what medicines I am given, should I be careful….doctors in the government hospital should be available and give some time to me…otherwise these tests mean nothing… I have hypertension and diabetes for the past 10-12 years, I also had a heart problem, I try to follow a healthy diet but I have stopped taking medicines, I cannot keep taking medicines forever unless someone explains to me why it is needed…..” (Prasad, Male, 65 years, both diabetes and hypertension, not under control)
Few patients also shared that, sometimes to avoid the long waiting time at the health facility or due to limited time given by the doctor to them, they decided not to visit the health centers resulting in the intake of the same medicines over the years without consulting the doctor. Also, lack of information on the disease and the medicines prescribed often led to negligence in taking the medicines as advised.
“I am fed up with the waiting period in the hospitals and that is why I don’t go to the doctor…They don’t make any changes to the tablets. IfI the sugar level increased they just increase 5 points in the insulin, other than that they don't do anything. ……have prescribed the same tablets for 3 years and I think they will give the same tablets for the next 10 years also (Nillamma, Female, 53 years, diabetic, not under control)
Interestingly, age also emerged as a barrier to practice a healthy lifestyle. In-depth interviews with younger respondents revealed that they tend to think of ‘here and now rather than distant future consequences. Other than their carefree attitude, how their peer group might judge them was more important to them as compared to their present health needs. Further, they hid their disease status from their family, friends and as a result received no support from them in disease management.
“I am young…this is the age to eat and drink… all this blood pressure and sugar are old people’s disease, I have to work and look after my family…I have not told about my health problems to anyone in family or friends…what people will say!!.” (Kartik, Male, 41 years, both diabetes and hypertension, not under control)
“At this age only I am suffering from the disease but it’s okay !! I am not like others. I'm not scared of anything…I eat everything and do everything I want. I have not told about my diabetes condition to anyone in the family or friends…I have many things to do in life…I have to build a home and get both of my sons married” (Laxmi, 46 years, widow, diabetic, not under control)
Further analysis from the narratives of the young people shows that the onset of chronic diseases like hypertension and diabetes and the recommended changes in lifestyle that come along with them often cause many young adults to feel “older” than their biological age. In-depth interviews show that often young people perceive it as shameful and the belief of their own identity and self-image as a “young” person is negatively altered. As a result, neither they like to adhere to any medication or lifestyle modifications nor seek any support from family or friends. Moreover, they try to hide it from their families and friends perceiving the age-related stigma of such diseases that may hamper their personal or working life.
The frontline health workers (FLW) and the counsellor played a pivotal role in the intervention. Their regular interaction and involvement with the patients brought many insights. The FLWs shared that often patients do not go for walks or exercise due to reasons such as inability to take time out of their daily routine, poor weather conditions or lack of motivation to go out alone. Also, some of the cultural food practices like ‘gudde mamsa’ where the whole community shares meat for eating were quite common. In certain rural communities in Karnataka, the practice of ‘gudde mamsa” is common. In this community practice, families do not buy meat just for themselves, rather they contribute to buy in bulk and each family gets 4-5 kg of meat (mostly mutton/red meat) for consumption. Sometimes, they also save money for this which they call ‘mamsada cheeti’ (a kind of chit fund for buying meat) and then they divide the meat through traditional ways among village communities. Such practices led to frequent and higher consumption of red meat than recommended. Moreover, among men smoking and drinking alcohol was also common in addition to this high consumption of meat.
Enablers of better control to hypertension/diabetes
A thorough study into each of the qualitative cases shows that those who had good control levels of blood pressure and/or sugar had also a strong support system with a cordial relationship between the family members. Strong family support not only motivated the patients to take better care of themselves but also provided emotional support to the patient in times of stressful events. Also, they ensured regular check-ups, proper, timely intake of medicines and help in making better lifestyle modifications such as preparing diabetic/hypertension friendly food, motivating them to do exercise, etc. Ms. Gayatri Shreedhar shared her experience of how the family support motivated and helped her adhered to the treatment regimens for a long time.
“I am perfectly fine…I am doing everything as per the doctor’s advice. I go out for a walk, practice yoga, do meditation, eat a balanced diet and go for regular checkups and medication refills. A few years back I had some severe health issues (ARCUPPA), I was operated on for that, my husband and children have supported me throughout my critical times… there was a time when everyone thought I will die but with my family’s support, I am perfectly fine now….even now my husband makes herbal coffee every day, takes me for a walk, monitors my food and always motivates me…both my children are there to support me…my daughter calls me every day to remind me of the medicines” (Gayatri Shreedhar, 63 years, hypertensive, controlled)
This indicates the need for family-centric intervention where an immediate support group is equally informed and counselled about the patient’s disease and support needed at the family or household level. Findings suggest that family involvement in the management of the disease was equally important and in most cases, they remain uninformed about the patients' health condition.
Qualitative data showed that certain independent factors like the previous history of hypertension/diabetes in the family or witnessing the loss of someone due to these diseases pushed the patients to take better care of themselves. The trauma or grief of losing loved ones and witnessing negative life situations motivated patients to be cautious about their own lives.
“I used to work in the ICU as a support staff and every day I saw many patients suffering from different diseases and I don’t want to become like them and suffer…so I make sure that I do everything to control my sugar and blood pressure level” (Harigowda, 63 years, both diabetes and hypertension, controlled)
“I have seen the deaths of my husband and mother-in-law. Nowadays I live alone here and if I feel sick also there is no one to take care of me… Hence I realised long back that I have to take care of myself so, I am taking tablets and doing yoga regularly” (Ratnamma, 83 years, hypertension, controlled)
Sometimes, life-threatening health events make the patient and their families cautious of their health and take better care of themselves. However, the above findings may vary, since it largely depends on an individual’s attitude towards life experiences.
“I can’t miss my tablets at any time. I have lost my vision in one eye due to my negligence, again I don’t want to take any chance and therefore I never miss the tablets” (Saraswati, 50 years, both diabetes and hypertension, controlled)