3.1. Identifying CKDu as a Health Hazard in the Local Context
CKDu was initially identified as a health hazard in both Medawachchiya and Padaviya DS divisions in 1990s by chance when patients visited local healthcare institutions seeking treatment for symptoms such as back pain, muscle pain, swollen body, urine infections and continuing fever, etc. (Abeysekera et al. 1996
; Athuraliya et al. 2011
; Jayatilake et al. 2013
). By scrutinizing those symptoms, local healthcare professionals were able to diagnose the above symptoms as being associated with chronic kidney disease. After thorough investigation through a medical gaze, healthcare professionals confirmed that the etiology of the newly detected disease was not similar to conventional explanations with regard to chronic kidney disease (Abeysekera et al. 1996
; Athuraliya et al. 2011
; Jayatilake et al. 2013
In response to this emerging health hazard, the biomedical system played a dominant role. Priority was given to providing healthcare services for patients while conducting diverse research to determine the unknown etiology of the disease. Parallel to this process, massive screening programmes were conducted at grass root levels to identify susceptible patients in endemic areas (De Alwis and Panawala 2019
; Jayatilake et al. 2013
). Medawachchiya and Padaviya DS divisions have been identified as high prevalence areas and labelled as “CKDu hotspots” since the beginning. The identified patients were categorized into five groups by biomedical practitioners based on criterion assessing the severity of the disease. Clinics were setup in endemic areas to provide treatment for patients. The patients who were in the early stages of disease were instructed to attend the clinic once a year for follow-up. Those in the middle stage of disease progression were referred the clinics once every six months for follow-up and those who were at critical stages were instructed to attend regular monthly clinics set up in their locality. The system initiated during the early phase of the endemic has continued without drastic changes. Patients’ narratives reveal that there are a number of gaps in service delivery mainly due to different perspectives and distant relationships between the biomedical healthcare providers and CKDu patients. As revealed through all our primary data sources, CKDu articulates in affected communities as “a struggle between life and death” where the well-being of patients, family members and the entire community has deteriorated. Empirical evidence reveals that CKDu patients experience diverse psychological disorders such as fear, anxiety, anger and sleeping disorders, particularly those who live in a place labelled a “CKDu hotspot” where causative factors seem uncertain and available options for curing are minimal. The patients and their families did not receive sufficient information from the clinic to manage ill-health related issues. The current system neglects to integrate these crucial psycho-social support services into the clinical setting.
As indicated earlier, over the past few decades a large number of studies were undertaken to determine the unknown/uncertain etiology of this newly identified disease by researchers from diverse disciplines. Biomedical research on CKDu included population prevalence and case-control studies; metal analysis of urine; analysis of hair and nail samples of patients for arsenic; renal biopsy studies and post-mortem specimens of CKDu patients such as kidneys, livers and bone tissues (De Alwis and Panawala 2019
; WHO 2016
; Jayatilake et al. 2013
). The environmental studies focused on testing samples such as irrigation water, agro-well water, soils of agricultural and non-agricultural lands, rice, vegetable, freshwater fish and other food items and nephrotoxic herbal remedies from high CKDu prevalence areas (De Alwis and Panawala 2019
; Jayasumana et al. 2017
; WHO 2016
). However, findings from these diverse studies resulted in only a large number of hypotheses without solid conclusions on the etiology of the disease (Rajapakse et al. 2016
). Furthermore, various studies carried out in other CKDu affected regions further confirmed the absence of a solid conclusion with regard to etiology of CKDu, though suspected causes were highlighted in their studies (John et al. 2021
; Paidi et al. 2021
; Lunyera et al. 2016
Four FGDs in the two settings clearly suggest that lay people in affected communities were marginalized throughout the investigation process to determine the unknown etiology. Their involvement was minimized to merely providing objects (hair, nail, kidney tissue, water sample, etc.) required for scientific investigation by biomedical and environmental scientists. The biomedical explanation of disease focuses predominantly on biological changes to the relative neglect of social, cultural and psychological factors. It is clear that the lay perception of the disease is totally neglected throughout the process of discovering etiology. Subjective interpretations were deemed irrelevant and patients were considered as passive objects, their involvement limited to only providing necessary objects. FGDs in the two settings reveal that these communities attracted a large number of researchers mainly due to high prevalence rates of CKDu. The environmental studies also operated a top-to-bottom approach by experts from various disciplines with contradictory conclusions, creating further confusion among affected communities (FGD No 1 and 2 in Medawachchiya, and FGD No. 3 and 4 in Padaviya). There are no remarkable contextual differences between the two settings with regard to identifying CKDu as a health hazard in two study settings as a similar processes operated in “CKDu hotspots” to identify patients, discover etiology and provide treatments.
3.2. CKDu Discourse among Affected Communities with Regard to Uncertain Etiology
Similar to expert groups, lay people also have their own discourse with regard to CKDu. This has been constructed and developed through the lived experience of participants, explanations given by experts who investigated the unknown etiology of the novel disease and beliefs in traditional culture. This discourse explores lay-perceptions and interpretations regarding the origin, etiology and prevalence of CKDu in their locality during the past few decades.
It is a dilemma within the two communities whether CKDu is a recent phenomenon in their localities or if it prevailed in the past. Most of the patients believe that the tragedy of CKDu is a recent phenomenon in their locality due to adverse effects of socio-economic and cultural transformations that occurred over the past few decades. However, recalling past experience, a few older adults who participated in a FGD at Medawachchiya pointed out that they had witnessed a similar type of illness with symptoms such as a disfigured-face, swollen body and breathing difficulties that was known locally as “pittapanduwa” or “pipihaluwa” (anemia or a condition of malnutrition), though it was not diagnosed as kidney disease. They believed that those symptoms were caused by a lack of blood in the body of the patient, and therefore he/she was treated with foods which villagers considered as the most nutritious and included various types of meats (Dadamas), milk, curd and certain types of locally available leaves (FGD No 1: male group at Medawachchiya). Adding to the discussion, one of the older adult participants noted that he was aware of some incidents where a number of patients presented with similar symptoms, compelling other villagers to migrate to another setting, believing that their locality was under the influence of demonic attack (FGD No 1: male group at Medawachchiya).
When I inquired about similar experiences from participants of the two FGDs at Padaviya, they were not aware of it. However, during a key informant interview with an older adult participant at Padaviya, he referred to his childhood experience as a member of an original migrant family. He was aware of a condition of “pipihaluwa” prevailing in dry zone areas, though he never personally witnessed such cases in his lifetime at the resettlement village. In contrast to the preceding view, a vast majority of villagers in both settings strongly believe that CKDu is clearly a recent phenomenon resulting from the mismanagement between the natural environment and the lifestyle changes of residents during the past few decades. Therefore, they view CKDu as a man-made disaster. The previous generations never experienced such a situation as they were capable enough to manage a harmonic balance between the natural environment and their social environment (FGDs 1 and 2 at Medawachchiya and FGDs 3 and 4 at Padaviya).
The four FGDs in Medawachchiya and Padaviya revealed how their water sources became polluted with the heavy usage of pesticides and chemical fertilizers in paddy and high-land cultivation. The tank was the main source of water for many purposes, and it was organized as a cascade system. There were distinct spaces allocated in it for each activity and the villagers had their own community-based systems like “shramadhaana” (voluntary participation to fulfil a particular task collectively free of charge) to maintain the village tank regularly. Diverse religious and ritual practices also contributed to protecting and maintaining the purification of the tank. The participants of FGDs explained how the village tank and other water sources became polluted due to changing agricultural practices, notably the heavy usage of pesticides and chemical fertilizers.
Key informant interviews with older adults and the information shared by participants at four FGDs in both settings clearly demonstrated that healthy, eco-friendly and sustainable traditional agricultural practices existed in their localities. The staple food of rice was cultivated in paddy fields while vegetables, greens, grains and cereals were cultivated in rain-fed lands commonly known as “chena cultivation”. The chena cultivation was also known as shifting or slash-and burn cultivation in which villagers searched for abundant land and prepared it for cultivation before the rainy season started. Immediately after the initial rainfall, they cultivated a huge variety of food items in chena which were completely organic and enabled them to consume a balanced diet to maintain a healthy life. The chena cultivation that provided diverse food varieties was gradually disappearing due to land shortages, risk of elephant attacks, etc. In response to the disappearing chena cultivation, villagers have started cultivating these food varieties in their home gardens which were previously for cultivating herbal medicine for minor ailments and supplementary cuisine flavourings found very often in cooking. Changing patterns of cultivation from chena to the small home garden plots demand heavy usage of chemical fertilizers and pesticides to cultivate similar type of crops repeatedly on the same land.
As one of the participants pointed out:
“One day I sprayed some fertilizers into my home garden and in the evening there was rain. Next morning when I went to the well, I saw hundreds of frogs died near the well. I am sure this was because of the fertilizer that I sprayed. This is the well that we use to get drinking water. So we can understand the bad effect of fertilizers, but we are helpless as there are no alternatives for this problem”
(CKDu patient who cultivates in home garden).
The popular discourse of CKDu among affected communities reveals that there are many causes of CKDu, including unhygienic drinking water, heavy usage of pesticides and chemical fertilizers, dehydration due to hot weather in the dry zone, snake bites, genetic factors, hypertension, diabetes, heavy use of alcohol, long term usage of medicines and hard work associated with their livelihood activities. Even though the participants have identified many possible causes for CKDu, they consider the heavy usage of agrochemicals and the poor quality of locally available drinking water as the main causes of CKDu. Therefore, they are in search of potable water from suitable sources even bearing out-of-pocket expenditure. An older adult male participant admitted that excessive usage of agrochemicals has polluted the area heavily and it is worse than it ever has been. As he pointed out,
“Not like in earlier times, all the farmers here are now depending heavily on agrochemicals. Water which flowed from culverts used to be exceptionally clean and drinkable and full of natural aquatic organisms during rainy seasons. Now, however, the water is inherently polluted”
(An older adult male CKDu patient who was a farmer).
Overall, we found that participants were largely unsure about what causes this illness. However, when asked why they thought the two main causes of CKDu were the heavy usage of agrochemicals or poor quality drinking water, most respondents mentioned that agrochemicals could have drained into their wells or there could be something harmful in the drinking water they have been consuming. People implicated poor quality drinking water as the main cause for CKDu. Some participants at the female FGD in Padaviya pointed out that:
“We cannot use the aluminum pot that we use for water storage for not more than a year as it gets damaged due to chemicals in the ground water. This is a good example for you to understand the damage that can happen to the kidneys of human beings”
(FGD No. 4: Female group at Padaviya).
This has led some villagers to walk several miles to obtain daily supplies of water from sources they believe are not contaminated (from spring wells, bottled water, water filters etc.), adding additional costs to the household budget. All patients in both settings have changed their drinking water source from ground wells to the Reverse Osmosis (RO) system. There is a community-based system to operate and maintain the RO watershed in the village that subsidizes families of CKDu patients.
Snake bite was also indicated as one of the risk factors associated with CKDu in Sri Lanka and in other regions (Lunyera et al. 2016
; De Alwis and Panawala 2019
). This hypothesis was developed after investigating case histories of CKDu patients and observing that a large number of patients have experienced a snake-bite attack at least once in their life prior to diagnose as CKDu patients (WHO 2016
). Gender difference in the rates of CKDu indicate a trend of male prevalence where two out of three CKDu patients are men (Ranasinghe et al. 2019
). While reviewing lived experience of CKDu patients in their local context, the participants of this study remark that snake-bite attack could be one of the main risk factors for this pattern of CKDu. As they explained, men are comparatively more vulnerable than women to be affected by snake bites and the venom could be damaging their kidneys. Adding to the discussion, they pointed out that a very dangerous snake unique to the dry-zone called “gata-polangga
” could be easily found in their community (FGD No 3: male group at Padaviay). These participants believe that snake-bite attack could be one of the main reasons for higher reported male CKDu patients in their locality. Additionally, men are more vulnerable than women to snake-bite attacks as they go out at night and spend more time during the day in their farmlands engaged in agricultural activities. Initially, they gathered this idea from experts who attempted to explore the unknown etiology of novel kidney disease and connected it with their lived experience. The participants of both male and female FGDs at Medawachchiya also believe that snake-bite attack could be one of the causative factors of CKDu as a vast majority of patients have a history of snake-bite attack in their locality. Participants of the female group at Padaviya accepted snake bite as a risk factor and added another explanation connected to the behavioural patterns of men. Specially they noted that most of them consume illegal liquor produced in their locality and have a habit of smoking (FGD No 4: female group at Padaviya).
Genetic factors are also seen as one of the causative agents, as in the same family a number of members suffer from CKDu. As is evident from our ethnographic investigation, we found ten families in Padaviya and three families in Madawachciya having two/three patients. As one of the patients pointed out:
“I am sure I got this problem from my family. My grandfather died because of kidney problems and then my father and his elder brother too died from kidney disease. So I hope there is more than enough evidence to support this argument”
(Male CKDu patient with a family history).
The perception that CKDu can be transferred from one generation to another has negative social consequences as a certain amount of stigma is attached with the disease. This is highlighted by villagers’ experiences and their voices. Lay persons, similar to professionals, are unsure as some of their experiences go against rational explanations on the causes for CKDu. As a result, they tend to justify and receive some consolation by attributing it to “Karma” (bad luck). As narrated by a patient:
“I know of a person in our village who never drinks boiled or/and filtered water. He engages in wage labour and spray fertilizes. He takes alcohol daily. However he is ok, but I am sick even though I am careful in my behavior and take precautions to prevent illness. So I think this is my bad luck/karma”
(Male CKDu patient).
It is significant to note that lay people, similar to experts, continue the discourse on the etiology of CKDu by further analysing their illness experience.
3.3. Illness as Perceived by Subjects
Illness narratives of CKDu patients and data gathered from four FGDs at Medawachchiya and Padaiya DS divisions reveal a similar pattern of illness categorization that includes three types of kidney diseases commonly known as: ‘vakugadu idimeema’ (kidney swellings); “vakugadu diyaweema” (kidney dissolving) and vakugadu ekileema (shrinking of kidneys). Initially, patients gathered these terms from the hospital. However, peasant society interpreted them by integrating observed day-to-day phenomenon in their surroundings related to their agricultural livelihood. They were not able to explain fully what these terms really meant but simply repeated that doctors used them. Being farmers for years and having gathered the experience from nature and its calamities, it seems people have feared these terms without proper information. Patients from both settings commonly utilized tertiary care services, and the same nephrologists served in CKDu clinics in both settings. It could be the reason for the construction of similar categories of illness by lay people in those two settings.
Interestingly, “shrinking” equates to the process that occurs during the wilting of maize. They assumed that the dissolution of kidneys is similar to the process of dissolving “urea”, a chemical fertilizer commonly applied by many farmers to enhance soil fertility. Contrary to the biomedical explanatory model, the shrinking of kidneys is not considered kidney disease within village discourse. According to their narratives, the physical appearance of people who are suffering from “shrinking of kidneys” looks very healthy as there are no visible symptoms except the protein that passes with urine, something they came to know from screening programmes conducted in their locality. According to their experience, urine infections are common in their locality due to the dry climatic conditions. They can be prevented by eating different varieties of cucumber and by herbal medicines which are commonly available in their locality. They believe that the cause of this type of illness is due to a lack of water intake in daily life. As narrated by a patient:
“I was identified as a CKDu patient at the mobile clinic in 2005. My urine sample was not good at that time and I was asked to repeat the test for another two times and found that protein passes with my urine. Therefore, I was referred to Kandy hospital for further checkups where I lost a part of my kidneys as doctors wanted a piece of my kidneys for their investigations. However, still I do not know the outcome of that test. I was referred back to the nearest hospital for treatment where I was asked to come for checkup once in 6 months and later on once a year. Last month only I attended the clinic and doctors said that I am ok. I had only a urine problem but not the CKDu. I drink polpala or ranawara (herbal medicine) for my urine problem as advised by my mother. After I started taking herbal medicine my urine problem has disappeared. So, I am ok now. However, I am bit worried as I have lost a part of my kidney. Will it be a problem for my kidney?”
(Female CKDu patient).
The dissolution of kidneys is connected with the damage caused by the impact of poisons entering inside the body. As a result, the kidneys are gradually dissolving and not functioning properly. The common symptoms are breathing difficulties, back pain and headache. They believe that the cause of the disease is mainly due to the impact of venom that entered the body through heavy usage of chemical fertilizers and pesticides applied during the cultivation of rice and vegetables, unhygienic water for drinking, snake bite, etc. They also believe that it would be impossible to recover the damaged kidney, but it could be controlled by taking medicine. During our interviews with CKDu patients, a number of them volunteered to share their experiences regarding doctor–patient interactions in their therapeutic encounter. Describing her illness experience, one of the patients pointed out that:
“The doctor said to me at once that you have the kidney problem that is spreading around Rajarata. The doctor showed me the image on TV screen and he told –look at your kidneys, it is small, and it is dissolving, only 10–15% of your kidneys are working. I couldn’t eat for weeks after hearing about it, I believe that the doctor should not say it to our face like this”
(Female CKDu patient).
Another patient sharing his experience noted that:
“Some of my friends were told (in the clinic) that they have the problem of shrinking kidneys, but I was never told what I am having. One day I inquired about this from the doctor at clinic. He kept quiet without answering”
(Male CKDu patient).
A further patient added
“I was screened for CKDu, when I got severe back pain –they said my kidneys were dissolving”
(Older adult male CKDu patient).
The illness narratives above reveal that there are a number of gaps in doctor–patient interactions where patients are not passive but attempt to explore the meaning of illness through their lived experience and associate signs and symptoms with those illness categories. Accordingly, some of the patients believe that shrinking kidneys are mainly due to a lack of daily water intake. Most of the patients relate their problem either with dissolving kidneys or swelling kidneys. According to their interpretations, these two types of kidney diseases are mainly due to the absorption of chemicals into the human body (angata wasa visa athuluweema) through contaminated water, food produced with intensive use of chemical fertilizers/pesticides and snake bites that are a common occurrence in their locality.
Most of the patients consider that the swelling of kidneys is comparatively the worst category of CKDu. It leads to severe breathing difficulties, swelling of the whole body, disfigurement of the face and loss of appetite. The patients who are recommended for dialysis are simply placed into either dissolving or swelling of kidneys by the concerned community. Though they have identified chronic back pain, hypertension and generalized body edema as the main symptoms of the illness, some people have ignored their pain, assuming it was probably due to excessive labour as farmers do work quite long hours in their paddy fields.
Once the kidneys are affected, they all know that the ability of the body to purify the blood was altered. Patients who have undergone dialysis or are referred to have dialysis know they had reached the end stage of the disease despite insufficient knowledge of the procedure of dialysis and its outcome. It was noticed that relatively young, educated patients gained the knowledge to understand the results of their blood reports. However, it was found that they still had not gained the knowledge of disease progression and available treatment options. The lack of knowledge could be the main reason for refusing to undergo dialysis whenever necessary.
3.4. Local Dynamics of Healthcare Seeking Behaviour and Emerging Demand for Complementary Medicine
It was found that all patients had been registered at the nearest biomedical clinic established for CKDu patients. Every patient acknowledged that they were diagnosed clinically by biomedical clinics in the area. Only a few patients visited the private hospitals in urban areas to get confirmation of the diagnosis made at the clinic. The illness narratives of participants revealed that they had little knowledge regarding treatment procedures at the CKDu clinic but rather were confused as all of them were given a similar type of medication irrespective of the different categories of illness explained earlier. Based on their three decades of experience, the community had concluded CKDu was an incurable deadly disease. They were aware that the medication given by the clinic only slowed the progression of the disease. The situation had become rather complicated due to the different opinions given by medical practitioners in healthcare management centres. As narrated by one of the participants:
“I was told by the doctor at the clinic that my kidneys are dissolving, but we had a consultant who came from outside to examine us from time to time. So, I asked him of what type of CKDu I’m having now. He said (the visiting consultant) there is no such a thing called kidney dissolving—so, I am confused. The consultant must be correct because he is an expert who came from a big hospital”
(Male CKDu patient).
All the patients maintained that they were not properly educated about the illness by the physicians. They have come to the conclusion that medical officers in the clinic have no sufficient knowledge about the disease as they are not aware of the causes/etiology of the disease. As a group of participants highlighted in a focus group discussion at Padaviya:
“What we know is what they (doctors) know, so what is the point of asking about the illness from them if they have no adequate knowledge about the disease. In fact, they didn’t tell us anything when we asked about our present situation. All they say is to take medication. But we know the medication does not cure the illness”
(FGD 3: male group at Padaviya).
The patients also pointed out that the quality of care given in the hospital was once quite high but has diminished over time. As one of the patients commented:
“At the beginning they (the physicians) recommended more blood tests per year and also they measured our weight, during examination. Now they don’t measure our weight and now we have to ask for a receipt to check our blood, they only measure blood pressure.”
(Male CKDu patient).
The participants pointed out that their quality of life never improved, even though they had been taking medication for months or sometimes years. Most of the patients added that they had never experienced any physical comfort. This is most likely why patients in the area have selected Ayurveda/traditional medication to replace Western medicine. Thus, we observed that the number of patients who seek Ayurveda medication increased. We interviewed a group of patients who had just registered in the nephrology clinic but did not adhere to any advice or medication. As one of the participants pointed out:
“We attend the clinic, only to take the 5000 rupees, not for any other reason. We take the medication and throw them away or give it to others who take western medication regularly. There are occasions where some medications not available at the hospital and patients are requested to buy them from the pharmacy. So, I usually store the medication to share with those who need them”
(Male CKDu patient).
As mentioned earlier, the government initiated a monthly cash subsidy for CKDu patients to support them. The patients who utilized Ayurveda simultaneously attended the CKDu clinic just to maintain a good record of attendance as it is evidence that they fulfilled the eligibility criteria for the monthly allowance and it preserved the choice to utilize the hospital in case of an emergency. Most of those patients pointed out that they had a guilty feeling as they discarded the medications given by the government hospital free of charge and used Ayurveda medicine, paying out-of-pocket. However, the patients rarely shared their experiences of Ayurveda/traditional medicine for CKDu with healthcare providers while attending the regular clinic, assuming the negative consequences they might receive in return. As one of the participants noted:
“The western doctors never encouraged patients to use Ayurveda/Traditional medicine though it gives us relief. If they come to know that we are using Ayurveda they might get annoyed. So, it would be better to be silent to avoid unnecessary problems”
(Male patient recommended for dialysis).
Patients’ narratives suggest that there is a huge gap in doctor–patient interactions. However, while patients seemed very silent in the clinical setting, they were very dynamic in other domains of their lives. They sought Ayurveda/traditional medicine from the practitioners who practiced within the locality and the more distant practitioners. Social networks and lay referrals played a crucial role in searching for multiple therapeutic options. In comparison with Western medicine, patients highlighted some of the improvements in their health condition with the commencement of Ayurveda/traditional medicine. According to the experience of those patients who utilized Ayurveda medication regularly, the functional capacity in their everyday life has improved to a great extent and they are involved in former pursuits again. Thus, reduced sleeping disorders, improved appetite and an added a hope for life were mentioned. Referring to the few failure cases in their surroundings, patients blamed those individuals, not the system, claiming they did not adhere to given instructions and medicine properly to manage the illness. They reiterated the fame of historical accounts of Ayurveda medication which were used in Sri Lanka for more than 2500 years before the introduction of western medication. On questioning, they emphasized that Ayurveda medications are made by the plant products known to them. They also said that the relative quantities of components of decoction differed from patient to patient. As a participant pointed out:
“My friend and I have different types of kidney problems. So, we were given different medication by the Ayurveda practitioner. But in CKDu clinic we both are given all the same medication.”
(Male patient who utilized Ayurveda for few months).
As previously stated, the villagers feared undergoing dialysis as they were under the assumption that it meant death was imminent.
“They (Doctors) asked me to undergo hand preparation procedure. I know once it was done, I can’t continue my usual activities. I know all the people who had dialysis, they died within a very short duration”
(Male patient who used Ayurveda after being recommended for dialysis).
It was noticed that most of the patients who were recommend for dialysis felt compelled to seek alternative treatment methods. We met five patients who refused to undergo dialysis. All of them mentioned that they did not want to insert any instrument into their body because if so, they would have to live with that instrument until their death. On further questioning of dialysis, they pointed out it was a lengthy, painful procedure and if the doctors find that their arm is not suitable–their next target is the neck. All these patients pointed out that dialysis brings patients to their death faster, recalling all of the names of neighbours/relatives who have died in the past, even though it seemed that they tried their best to avoid undergoing dialysis. This kind of attitude compelled patients to turn to an alternative medication where there were no known invasive procedures available. Patients who underwent dialysis showed us their disfigured hands. As one of them stated:
“It never ends, there will always be more dialysis you need to have done in future.”
(Male patient who had undergone the process of dialysis).
Another participant pointed out:
“Every patient who has had to undergo dialysis has quit their job and now lives an uncomfortable, unfulfilling life”
(Male CKDu patient).
Narratives reveal that most of the patients did not trust the medical report given by the clinic, so they habitually repeated the blood test in private centres at Madawachchiya or Padaviya. Some of them used to take tests from centres further away in Anuradapura, Kandy and Trincomalee. They gathered these reports and compared the values of one over the other. All maintained that their final referral was to the government hospital in an emergency, and therefore they tried their best to maintain a superficially good relationship with hospital staff. They pretended to follow the exact instructions given by the doctors, fearing they would not receive further treatment if the hospital staff realized that they had ignored the instruction given to them. As one of the participants remarked:
“Even though we don’t take medicine, we attended the clinic regularly, so on emergency we have proven that we were very obedient to the doctors’ instructions, by showing our clinic record books”
(Male patient who used Ayurveda after being recommended for dialysis).
Patients were assured by Ayurveda medical practitioners that CKDu is treatable and has a permanent cure, provided the patients follow instructions assiduously. Patients were comfortable with the ingredients used in preparing medicine because they were known to them and were in abundance around the area. Some of the ingredients have been known for the treatment of urinary tract infections and therefore patients were aware of them and were knowledgeable regarding the uses and effectiveness of that medication. During our interviews, some patients claimed that they were completely healed. Patients believed they could avoid dialysis if they started complimentary medication soon after the diagnosis was made.
One thing that all participants accepted as true, which is not the case in reality, was that once a patient was told to undergo dialysis death was imminent. Consequently, they tried their best to avoid dialysis. It was not known by patients that dialysis was their final option when they enter the last stage. Patients were asked to come and prepare their arm for dialysis. Most of the male patients were the breadwinner of the family and were not able to totally step away from their responsibilities and accept their sick role. Five of the patients who were recommended for dialysis have moved to alternative medicine. However, within the two communities there was a discourse regarding the role of complementary medicine for CKDu, and some patients were reluctant to move from western medicine to Ayurveda/traditional medicine. All the patients adhered to meditation and religious healing techniques as complementary to Western or Ayurveda medical systems.
The lay explanatory model of CKDu and the healthcare seeking behaviour of patients revealed that Ayurveda/traditional medicine played a key role as a complementary system which helped patients to overcome some of the limitations of the dominant system of biomedicine. Illness responses of CKDu patients support the argument of a non-system approach where health seeking behaviour was predominantly determined by pragmatic factors such as the comfort and improvements of daily functional capacity of patients, friendly healer-patient relationships and positive feedback with an increased hope for life, etc. (Liyanage and Ekanayaka 2018
; Silva et al. 1994
; Caldwell et al. 1989
). Lay referrals of patients played an important role in both decision making and in finding suitable practitioners even from distant places. Family bonds of patients were further strengthened through the healing process as it required a collective effort in preparing decoctions, applying medicinal oil, etc. Thus, Ayurveda/traditional system functioned as complementary where the healers encouraged patients to attend regular clinics and even to use their clinical reports for monitoring purposes. However, patients remained quite reluctant to share the experience of complementary medicine with western medical practitioners, assuming possible negative feedback.
There is an increasing demand for complementary medicine over the past few decades, particularly with regard to chronic health problems (Zörgő et al. 2018
; Eaves et al. 2015
; Ritenbaugh et al. 2011
; Cant and Sharma 1999
). A qualitative study on culturally embedded factors in complementary/alternative medicine use advocates avoiding a dichotomization between “push and full factors” and highlights significance of taking context specific factors into account (Zörgő et al. 2018
). Some studies have focused on integration between complementary/alternative medicine and the “orthodox” medicine that goes beyond both dualism and pluralism (Wiese and Oster 2010
). Integration involves the selective incorporation of aspects of complementary/alternative medicine to be used alongside biomedical treatment (Wiese and Oster 2010
). This integration involves respect and collaboration between different views of health and healing and requires a mutual transformation that may not always be acknowledged by different types of healthcare providers (Glasby 2005
). Findings from our ethnographic study suggest that working relationships between modern and traditional practitioners is essential to strengthen responses and deal with contemporary health hazards in a context where dissatisfaction with the healthcare outcomes abounds. It is obvious that Ayurveda/traditional medicine offers a complementary approach that enables participants to minimize some of the negligent features in the dominant healthcare delivery system. However, the provider perspective requires more collaborative efforts to ensure a complementary system given the strong desire from the user perspective.
3.5. Drawback to the Dominant Healthcare System and the Transformation of CKDu Hotspots into Sites of Humanitarian Concern
CKDu is a novel experience for both the patients and the healthcare providers. Our ethnographic study examined insights of the popular explanatory models of CKDu which have been constructed through the lived experience of laypeople during the past three decades. The popular explanatory model of CKDu highlights a number of gaps in interventions addressing the emerging health hazard with an uncertain etiology. The findings indicate that the affected communities have been marginalized in the process of discovering unknown/uncertain etiology and in the decision-making process of ill-health management. The biomedical system itself has a number of limitations including: championing mind-body dualism; explaining disease by predominantly focusing on biological changes to the relative neglect of social, cultural and psychological factors that are also associated with the problem; and assuming every disease is caused by a specific identifiable agent/disease entity (Nettleton 1995
). The illness narratives of CKDu patients revealed that enormous discrepancies exist in doctor–patient interactions; the doctor attempts to configure the disease through the medical gaze and adopts a rather dehumanizing stance, resulting in the segregation of a patient’s body from the person. Thus, patients are treated as passive beings, their subjective awareness deemed irrelevant, and treated as a homogeneous category labelled as “CKDu patients” rather than acknowledging their human diversity. The situation causes further confusion among laypeople due to the medical language used in CKDu clinics by healthcare providers. Huge discrepancies occur in doctor–patient interactions which are not simply due to the disease’s uncertain etiology but stem from a lack of required cultural competency, communication skills and humanities among the healthcare providers who practice in the areas where the disease has become a tragedy. Hence, in a context that is highly dependent on laboratory medicine, both the doctor and the patient are displaced by the scientific tests carried out in these laboratories. The experience of CKDu patients illuminates a number of limitations in the biomedical system dealing with chronic health problems which require a holistic and collaborative approach by including patients and healers in the context of culture (Kleinman 1980
). In every culture, illness, the responses to it, individuals experiencing and treating it and the social institutions relating to it are all systematically connected. The health care system, like other cultural systems, integrates the health-related components of society (Kleinman 1980
The specific context strongly demands an integrated and collaborative approach to understand CKDu as a community problem. However, most of the medical research was carried out in hospitals and the link between community and hospital in Sri Lanka is almost absent in CKDu research (de Silva 2015
). The unhealthy compartmentalization has prevented a comprehensive understanding CKDu as a problem in the community rather than only at the level of individual patients (de Silva 2015
). Findings of the present ethnographic study indicate an increasing trend of psycho-social issues in community settings not simply due to the uncertain etiology of the disease but also due to medicalized understandings of the issues surrounding CKDu which highlights the need to design interventions accordingly. Healthcare providers have not been able to convince the public that early diagnosis and treatment can relieve most of the problems associated with the later stages of the disease (de Silva 2015
). When dealing with a community-wide disease like CKDu, it is imperative that a strong link between communities and the medical profession is forged in such a way that patients and families have confidence in hospital staff. Biomedical research on this complex syndrome has revealed little over the last few decades (de Silva 2015
The evidence also indicates a necessary transformation from “CKDu hotspots” to sites of humanitarian concerns. Limited social protection mechanisms are in place to provide a minimum safety net for most vulnerable families, but they are not sufficient to fulfil the growing demands from the tragedy. Civil society organizations are also involved in providing social service for vulnerable sections in CKDu affected areas, including material benefits for children in education, drinking water facilities and logistics for patients who come to tertiary care services, etc. However, the experience of participants reveals that there are some issues as most of those support services are irregular and also lack appropriate mechanisms for the fair distribution of services. The healthcare delivery system plays a dominant role in maintaining CKDu clinics in affected areas. However, patients have to spend out-of-pocket expenditure for various reasons.
Emerging psycho-social issues due to CKDu are rather neglected (Liyanage 2019
). Considering its high prevalence, some of the areas have been labelled as “CKDu hotspots” to prioritize healthcare needs for the affected people in those areas. Unfortunately, labelling them has a social cost. The participants pointed out that they are experiencing several negative consequences due to identifying their localities as “CKDu hotspots”. As mentioned earlier, CKDu is associated with sigma. We observed some cases where CKDu patients face difficulties in finding partners for their children as genetic factors have been indicated as one of the causative agents. During our fieldwork, we came across some incidences where patients were attempting to hide the illness to avoid negative consequences. Some participants pointed out that they feel embarrassed when others see them as an abundance of sympathy harms their dignity. However, further studies are required to examine how stigma interacts with CKDu and its implications on affected communities. Insights from lay perspectives of CKDu indicate these negligent features and create a demand for humanitarian concerns through an integrated approach.