Self-medication.

All patients, including those who were deceased, initially treated the symptoms themselves using medicines purchased over-the-counter for varying lengths of time. Men who migrated to cities for work during the early stages of the illness, or had already migrated when symptoms began, resorted to self-medication in the locations in which they had migrated to. In general, men and women with late access self-medicated for up to two months, while men and women with early and moderate access did so for a few days to a few weeks.

“I did not tell anyone for a month, took tablets only”.–WM4

“I bought medicines from the corner shop and took for a month”.–WM5

“I took tablets from the local shop”.–WL13

“In the meantime, I took tablets for fever, from local shops. I thought, ‘It’s only fever; it will become alright’”.–WM2

Treatment from the local provider.

Unqualified, itinerant providers of care were the first port of call beyond self-medication for almost all participants, regardless of OT. About half of the women with late access and a few women with moderate access sought care from several local providers. The “local doctor” (as they are referred to by the community)–tended to have worked within the community for long enough to have earned their trust as one who provided fairly effective initial care. Patients reported that the local doctor gave medicines on credit, which appeared to be an attractive feature for such a poor population.

“We trust this local doctor and usually go to him. He also treats on credit. And we had no money at the time”.–WM8

“We took him to the local doctor. He is the doctor we trust, and everyone here goes to him. And he treats well. He gave medicines for 10 days”.–SA1

“I took tablets from the local doctor. He would come here every day. We go to this doctor for every illness”.–SA3

“The neighbours said ‘He (the local provider) is a good doctor. Even children get better with his treatment. And we can even pay him later, as he’s a village doctor’”. WE1

“The doctor in the town gave medicines for 10–12 days. For all common illnesses, we go to him, so I went, too”.–WE10

“I went to a local private doctor, after 2 months of fever, along with my husband. For all the illnesses in our family, we go to this doctor. So I went to this doctor thinking my fever will get better (with the treatment he gives).”–WL3

“I decided to show to the local doctor. He was the nearest one and also we could pay him later, so we decided to go to him”.–WL5

“Then we decided to go to a local private doctor. He is popular–many in our village go to him”.–WM6

At the same time, the patients were under no illusion regarding the scope of the local provider’s expertise, and they knew that illnesses often went beyond their ability to treat. Community elders echoed all of these perceptions.

“We thought to first show to a local doctor, and if not better, to go to a better hospital”.–ML1

The local providers who participated in the study were very aware of this trust placed in them, reciprocating it with their being available and accessible, and with what they perceived to be timely referral to higher levels of care. They report that they have suspected VL in patients and have encouraged them to go the government facility for testing and treatment. A few KTS’s attributed the delay in patients reaching government facilities to local providers’ attempt to retain patients. The patients, however, indicated that they switched providers when the treatment did not work.

Vague symptoms.

A key driver was the perception that the illness was “mild” or was “just a fever” amongst most of the women with moderate and late access and one woman with early access, as well as in the case of two of the three deceased. They hoped the illness would improve with self-medication or with treatment from the local provider.

“We thought he’ll get better as the fever was mild”.—SA1

“I thought, ‘This is just a weakness, just like that, and I am not ill’”.–WL11

“I thought, ‘This is an ordinary illness; it will get better’”.–WL12

“I waited for 10 days thinking fever will get better with just tablets”.–WL5

“I thought I would get better just like that; it’s only a ‘mild fever’”.–WM4

The majority reported that they were able to continue with their basic physical activities, especially in the initial weeks of the illness. A related factor was their perceived inability to put a finger on what was going on with their bodies; the symptoms did not seem to fit any pattern of illness that they knew of. This fuelled the hope that this could not be a serious illness that warranted financial expenditure.

“I sat at home for another month hoping the fever would get better. I continued to work a little at a time, but I was growing weaker gradually”.–ML5

Seven of the ten women with late access, seven of the ten women with moderate access and relatives of two of the three deceased mentioned this perception. These perceptions are in keeping with the chronic nature of the illness and the insidious onset of symptoms, and it seemed to have helped the patients justify choosing cheaper treatment choices, and the decision to continue working.

“For 15 days, I took local treatment, thinking that this is a mild fever, and will become better”.–WE8.

“In the meantime, I took tablets for fever, from local shops. I thought It’s only fever; will become alright”.–WM2

“After a month (of not taking any treatment), I started taking tablets, thinking this is an ‘ordinary illness’”.–WM9

With tragic hindsight, the wife of a deceased patient remarked that she would advise others “never to consider any illness as mild”.—SA2.

Female patients mentioned the perception that “weakness” is an enduring female health condition and does not require serious attention. Thus, the non-specific symptoms of VL, therefore, were taken to be part of a general fatigue

Lack of money.

Most women with moderate and late access and two men with late access mentioned that there was no money in the home to afford anything beyond their early treatment choices. The reference to the lack of money implied the perception that their treatment choices were less than ideal, but on the other hand suggested the perceived mildness of the illness did not justify any further expense, especially in such a disadvantaged population. The lack of money, however, appeared to be a deterrent to seeking care at private facilities which were generally perceived as providing a better quality of care (see below), and not necessarily a deterrent to visiting a government facility.

One woman with late access stated that she first thought, “It’s only a fever; it’ll go away on its own. And there’s no money anyway.”—WL3

“I thought this is a ‘mild fever’ and will get well with tablets. Also, I did not have enough money to go to other places.”–WM6

“For about a month, we did not know what to do; we did not have enough money.”–WL8

“I didn’t tell anyone for one month. Money was short. I just took some tablets hoping it would get better.”–ML3

Community members as well as local providers in all locations expressed the view that women do not want to spend their meagre resources for their illnesses, and hence delay seeking care for longer than men.

“When the man is not in the house, the woman does not have access to cash and so she delays.”—PP7

“Women don’t want to leave their household chores and also don’t want to spend money, especially when money is already short”.–FGD10

No male guardian at home.

Many female patients self-medicated and/or consulted with the local provider as they did not have a male member of the family at home to accompany them outside the home, and especially outside the village. This was mostly because the men had migrated to cities for work, or were outside the home from dawn to dusk. Participants in nearly every interview and discussion, including community elders, local providers and KTS in the study echoed this view. A community elder stated: “The man is not in the house; how can we expect the woman to go to the hospital alone?”(FGD6). A related factor was that the women tended to have no access to cash when the man was not home.

“Women are not able to come when the man is not at home”.–HW8

“They (the women) need permission from the man, and the man may be outside (the home); or there may be no money, and it takes time to arrange for money”.–PP4

“Sometimes the delay could be due to lack of money, or because the man is not at home”.–PP5

“Women also delay because they have to wait for the man to accompany”.–HW6

“Women delay more, as they have to wait for a male guardian to accompany them to the hospital. The men are either not willing or stay in cities for work”.–HW7

“I did not go earlier to this doctor, as there was no male relative to take me for treatment”.–WL1

“For the first two months, my family members decided to get me treated by the local doctor. My husband was in a city for work”.–WL4

Low prioritisation of womens health.

Local providers reported a pattern of longer delays in care seeking amongst women compared to men, even when the women were aware of the need to seek care. All community groups as well as local providers and government staff opined that women prioritized their household chores over seeking treatment on time.

“Women go for treatment only after finishing all their household duties. That often leads to a delay.”–FGD1

“Women delay because they don’t want to leave their work and come to the clinic.”–PP11

“Women delay more than men, because women have more responsibilities to fulfil.”–HW2

Female patients, as well as community groups mentioned that there is “a lot of work at home”, demanding constant attention from the woman, leaving her with no time to attend to “mild” symptoms. Community groups and local providers also reported that families considered that the woman’s health was not “of such importance” that she should miss household chores to attend to it. One local provider (PP9) explained, “Men have to go outside and earn money. It is important work. Women’s work is not that important.” Thus, women’s work in the home is considered inconsequential, and yet not something to be ignored. One woman with late access reported that she requested her husband to take her for treatment when self-medication did not work, but that her husband ignored her request for some days.

“When it did not get better after some days, I told my husband to take me for treatment. He didn’t pay attention to it”.–WL3

All of these point to a pattern of low prioritisation of women’s health, both by the women themselves and also by their families. These perceptions are echoed in a 2003 study from Bangladesh on care-seeking patterns among women with VL, which found that women try to ignore their illness as long as they can so as to avoid additional expense [17].

Combination of drivers.

The above factors seem to have worked in combination, and made for potent arguments driving the early treatment choices that the patients made. Self-medication and treatment from the local provider seemed to help patients buy time, in order to arrange for money (often borrowed) or to get a male relative to accompany them in order to move to the next set of treatment choices.

Further treatment at private facilities.

As the illness progressed, the majority of patients reported having sought care from private facilities and clinics. Most of these facilities are run by qualified providers, and are located in nearby towns, while some participants travelled up to 40 km to seek care at facilities that were popular amongst the local community. In an extreme instance, one woman went to 15 local providers and private facilities before being told to go to a government facility. In all of these instances, these facilities provided treatment for up to a few weeks, after which they ran a host of tests for the participants, including for VL. In most instances, the diagnosis was made at this point, and these facilities encouraged the participants to go to a government facility for further treatment, but in two cases, they attempted to treat it themselves, without success, wasting precious time. In one instance, the private facility told the patient’s family to “sell your land, not just goats, and bring the money for treatment” (ML2), as the illness was a serious one.

Tipping points.

For most of the patients, diagnosis of VL at a private facility and encouragement of private providers to seek care at a government facility was the tipping point in seeking care at the latter. For a few of them, it was an encounter with a “government health worker” (presumably the KTS) from the local government facility, who had come to their village looking for cases of prolonged fever. A few others reported being noticed by the ASHA, or approaching her themselves, who then accompanied them to the government facility. For a small number, a neighbour or a relative suspected that the illness could be VL, or another serious illness that required that they attend a government facility. There was only one patient in the sample, a woman with early access who did not “shop” for care, but went straight from being identified as a suspected case in her village during a health campaign to seeking care at a government facility.

The government facility as an early treatment choice.

For most patients, the government facility was not the first, or even the third or fourth option for treatment. This is based on their past experience and perception that these facilities do not have all the tests and treatments available. The latter perception was voiced in all discussions with community elders and in interviews with a few patients.

“Govt hospitals take a long time to treat us. We have to go there again and again and that means more expenditure.”—FGD5

“People generally prefer private hospitals, even though it costs more, because in a govt hospital, you have to stand in line for hours and then the man there gives 1–2 tablets and says ‘That’s it. Done’.” -FGD6

“Although treatment is free in government hospital, it is far off, and often medicines are not available there.”–FGD9

“It’s all good (at the government hospital). But we don’t get all the medicines that are prescribed.”–FGD2

“They (the staff at government hospitals) speak dismissively to us.”–FGD8

A related perception for some was that the government facility is where the poor go for treatment while those who can afford it, go to private facilities, implying that the former is a less-than-ideal choice.

“People go first to govt hospital because we are all poor. If we don’t get better there, we think of going to a private hospital.”–FGD7

Too early to detect VL?

In a stark departure from the above sentiment, three patients–one man with late access and two women with moderate access–sought care at a government facility within two weeks of the onset of symptoms. However, they were not tested for VL, presumably because of the early stage of the disease at the time means that testing with available tools is not recommended. The male ended up in a series of other facilities before finally returning to the government facility, amassing an OT of 120 days. The women, however, returned to government facilities within about 35 days, but not before going through a round of visits to private facilities. Two other women, one with late access and the other with moderate access reported testing negative for VL at a government facility but went through a series of private facilities before returning to the government facility and subsequently testing positive. None of the above participants recall being given advice on follow-up during their first visit to the government facility.

Relief with treatment.

Patients vividly recall the dramatic and complete relief from symptoms that they had following treatment. They also recall having had an overall pleasant experience at government facilities where they received treatment. One woman recalled that the facility staff gave her and her family money to get a ride back home.

Variations within the overall pattern.

Women with early and moderate access and men with moderate access seem to have stayed for a shorter period of time with their early treatment choices and moved on to private providers. Moving to private providers seems to have expedited the chance of diagnosis and encouragement to ultimately attend a government facility in many cases. In some instances, the patients was familiar with another person who suspected VL and guided them to the government facility, thus cutting short what could have been a longer search for cure. Fig 3 below depict the variations for women with early and moderate access.

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Fig 3. Care-seeking patterns of women with early and moderate access.

https://doi.org/10.1371/journal.pntd.0007457.g003

The low level of suspicion of VL among patients and their families has been a surprising finding considering the breadth of the elimination effort in the highly endemic districts. This is unlikely to be due to patients ignoring the possibility of VL, as these very patients state that they would not have shopped for treatment had they been diagnosed with the disease earlier. Instead, there appears to be an implicit expectation that a potentially fatal disease would have unequivocal and severe symptoms. It also appears that the illness does not stay long in corporate memory, ostensibly due to the insidious onset and non-specific symptoms. These suggests a need to include stronger messages that symptoms of VL can be mild and non-specific.

Unsurprisingly, local providers (‘local doctors’) appear to be a vital part of the local healthcare ecosystem. A study of VL patients in Bangladesh found that 49.5% of patients first consulted a local, unqualified provider [18]. Although these providers are not recognised as health providers, further improving and sensitising them to VL may improve the earlier detection and treatment of cases, while encouraging them to promote the importance of health in women suffering from persistent fever.

The low status of women seems to underlie the other, more immediate drivers of choice. Female patients appear to have inherently accepted the low prioritisation of their health, as is evident in their playing down of their illness more often than men and for longer periods of time, especially when symptoms are non-specific and hence considered “mild”. The widely reported prioritisation of household chores by women seems to have been born out of this low status afforded to them, both by their families as well as society in general. When they do feel the need to seek higher levels of care, the lack of a male family member to accompany them to the government facility contributes to the delay. The concept of “guardian” is integral to the gendered social order of rural India, and is not only socially acceptable but is also considered as a safeguard for the women who do not have the knowledge and tools needed to navigate the marketplace. Therefore, it will be important that messages addressing delayed for VL care-seeking by women to take into account this reality, and emphasise to male decision makers, and community health decision gatekeepers the importance of encouraging early access to care for women presenting with persistent fever and other non-specific signs of disease.

In summary, the early treatment choices of self-medication and local providers are likely to persist. The mild and non-specific symptoms of VL, lack of money, absence of a male guardian, the ease of obtaining ‘trusted’ treatment at the doorstep and a history of unhelpful experiences at the government facility, underlined by a sense of low status for women and their well-being appear to be the layers of perceptions and harsh realities from which women with delayed access have made higher-order abstractions.

Help raise awareness about suspecting VL strongly when there are vague symptoms, and emphasise the need for early care-seeking for women, through clearer messaging.

This study has shown that adequate knowledge about VL and even past experience of the illness in the family and community does not guarantee that VL will be suspected, especially for women. Conversely, whenever VL was suspected, it meant the end of treatment shopping. This shows the need to create and maintain a high level of suspicion for the illness–especially in women who tend to dismiss symptoms as “mild” and not reaching the relatively higher threshold that the community–and they themselves–set for seeking care outside the house. This focus on female perceptions and low prioritisation needs to be relayed to communities, among frontline workers, local providers and private facilities in these highly endemic districts. A qualitative study on the barriers to treatment for VL patients in Sudan found that VL patients perceived the illness to be “dishonest” and “in hiding”, requiring many tests to diagnose it, and highlighted the need to address the barrier caused by these perceptions [19]. A behaviour change intervention study conducted in Bihar and Jharkhand in 2017 found that 77% of households in intervention villages reported that they would encourage anyone with VL symptoms to seek care, compared to 39% in control villages [20]. The focus and messaging in communication and training efforts needs to be adapted to reflect the mildness and non-specificity of symptoms in the early stages of the illness, the importance of maintaining women’s health for the well-being of the entire household and the need for women with symptoms to seek testing at the government facility even when symptoms appear to be mild. Messaging has to factor in the imperative of finding a male relative or trusted neighbour to accompany women to the government facility, if the men in her family are not in the home, and also highlight the fact that women prioritising their wellbeing over household chores is a smart choice in the long run. The impact of delayed treatment in the form of prolonged morbidity and lengthy time being spent unable to conduct activities of daily living should be emphasised.

Reduce missed opportunities in government facilities.

This study has shown that patients continue to slip through the very system that aims to reduce the time to treatment, albeit largely due to the lack of adequate tools to make a diagnosis of VL in under 2 weeks of onset of symptoms (this is the earliest point that a patient should be tested with the rapid diagnostic test for VL). It also takes a lot more effort and time to bring such a patient back into the system, once the patient has been turned away without the diagnosis made, and as such it is important that practitioners are trained on how to address the ‘risk’ of VL in patients presenting earlier than 2 weeks, through appropriate counselling and follow up in case symptoms persist. Such near-misses also reinforce the perceptions about the quality of care in government facilities. Clinicians need to maintain strong suspicion for VL especially in the face of non-specific symptoms, and protocols revised to include a follow-up plan for those who test negative or who do not qualify for a test.

Sensitise informal and formal private practitioners on both VL and gender barriers.

The study has shown a clear trend of informal and formal private practitioners encouraging patients they diagnose with VL to attend government facilities. It has also shown that local informal practitioners are much closer and more trusted by women than the government health facilities; as such they can be co-opted to play a major role in emphasising and encouraging women with symptoms of VL to access early and appropriate care. These constitute a low-hanging fruit in the effort to reduce delay for female patients. The programme should aim for wider coverage in sensitizing private providers, and increase the frequency of contact, with the objective of ensuring that patients are referred as soon as VL is suspected or diagnosed.