Diagnosis and treatment for visceral leishmaniasis (VL) is considered to be delayed amongst poor, rural women in highly endemic districts of Bihar and Jharkhand. The objective of this study was to assess and understand barriers to VL diagnosis and treatment for women in endemic districts with a high burden of VL. The study used a stratified and purposive sample of 33 female patients with VL, 11 health staff, 11 local (unqualified) health providers and 12 groups of community elders drawn from ten districts in Bihar and four in Jharkhand with high burdens of VL. The study was conducted within an exploratory and inductive framework, using semi-structured in-depth interviews and discussions. Women accessing treatment more quickly tended to move faster from treating their symptoms on their own to seeking care from local providers. Perception among female patients of the illness being not serious (owing to initially non-specific and mild symptoms), lack of money, prioritisation of household chores over their need to seek care and the absence of a male guardian to accompany them in seeking care at facilities worked together to drive these choices. Most patients and their families did not suspect VL as the cause for their non-specific symptoms, but when VL was suspected, treatment shopping ended. Lack of prioritization of women’s health issues appears to be a pervasive underlying factor. Public health facilities were not an early treatment choice for the majority, but where it was, the diagnosis of VL was often not considered when presenting with under 2 weeks of symptoms, nor were appropriate follow-up plans instituted. The insidious presentation of VL and the low prioritisation of women’s health need to be jointly addressed through messages that emphasise the importance of early diagnosis and treatment of disease, which is low-cost in time and money when managed in public health facilities. Clear messages that project prioritising women’s care-seeking over household work as a smart choice and the need for rallying male support are needed. Additionally, efforts to reduce missed opportunities through early case suspicion and engaging private providers to better counsel women with suspected VL could close critical gaps in the continuum of care.
Visceral leishmaniasis (VL) or Kala azar, is a vector-borne disease caused by the protozoan Leishmania donovani and transmitted through the bite of the phlebotomine sand fly. Up to 100,000 cases are estimated to occur globally every year [1], and the disease is normally fatal within two years if untreated [2]. The pathogenesis of VL is complex and clinical presentations vary from asymptomatic infection to fatal disease [3,4]. While VL is highly endemic in the Indian subcontinent and East Africa, India accounts for nearly half of all cases worldwide [1]. The epidemiological features of the disease in the Indian subcontinent together with the availability of effective diagnostic, treatment and vector control measures make it amenable to its elimination as a public health problem [5]. As such, since 2005, India has been part of a regional initiative to achieve this elimination target [6], defined as less than 1 case per 10,000 population at the sub-district level. In the Indian context, these units are called blocks, with populations ranging from 80,000 to 300,000. As a result of the elimination efforts, and possibly also due to the cyclical epidemic nature of VL, there has been a steady decline in reported cases, with an 82% decline between 2011 and 2017 [7]. Despite the encouraging trend, much remains to be done. India remains the only country in the regional elimination initiative that has not yet reached the threshold target, with the disease continuing to be endemic in the states of Bihar, Jharkhand, West Bengal and Uttar Pradesh. By 2018,49 blocks in Bihar and 25 blocks in Jharkhand have not yet achieved the elimination threshold, with Bihar contributing to nearly 70% of national cases [7]. These highly endemic blocks are spread across 10 districts in Bihar and four districts in Jharkhand. Under the aegis of the National Roadmap for Kala azar Elimination and with support from a range of stakeholders, over recent years there has been an accelerated effort to control the disease, with rapid diagnostic tests made available at all, and treatment with single-dose Liposomal Amphotericin B at selected nodal public health care facilities in endemic blocks [8]. Kala azar technical supervisors (KTS) at each block oversee vector management and active surveillance, while frontline health workers called Accredited Social Health Activists (ASHA) support prevention and case detection activities at the community level. Development partners have also been conducting a wide range of community education efforts for VL. Timely detection and treatment of those with acute symptomatic VL is the mainstay of elimination efforts, as this results in the interruption and shortening of transmission from human hosts, which are currently the only known reservoir in the Indian subcontinent. Results from recent modelling studies suggested that decreasing the time between the onset of symptoms to treatment (OT) from 40 to 20 days could bring the elimination target forward by a year [9], with an even larger potential in Bihar [10]. Women with VL appear to access care later than men. A retrospective study of VL patient data from 2012–13 in Bihar found significantly lower proportion of women among reported cases compared to the background population. The paper concluded that this is likely due to under-reporting (as a result of poorer access to healthcare for women), and not necessarily due to lower incidence amongst women, as there was no corresponding difference between the sexes among those under 15 years of age [11]. This is supported by a 2014 study that showed a marked decrease in the proportion of female patients with rising age [12], while an earlier 2006 study that showed that 60–80% of VL patients in facilities were men [13]. A 2003 study from Bangladesh reported that in one highly affected village, reproductive-age women were three times as likely to die from VL compared to men or children; where VL accounted for 23% of all deaths, 80% of these were adult women. Qualitative data from the same study suggest that women experienced substantial barriers to seeking care [14]. VL remains a disease of the poor, with 83% households belonged to the lowest two wealth quintiles in the state’s wealth distribution, while 70% live in mud adobe houses, consistent with the breeding preferences of the sand fly [15]. Caste is an important and reliable indicator of socio-economic status and is used in national surveys as a measure of economic inequality and access to services. It appears that those belonging to the caste categories of Scheduled Caste (SC), and Scheduled Tribes (ST) are disproportionately impacted by VL: a 2012 study of VL patients in Bihar, found that patients from SC had twice the odds of presenting late at treatment centres than others [16]. The objective of this study was to assess and understand barriers to VL diagnosis and care for women in endemic districts with a high burden of VL.
The study was designed to be exploratory and inductive within the post-positivist paradigm, using qualitative inquiry techniques. A purposive and stratified sample was used, with the overall intent of providing a rich and contextualized understanding of care-seeking patterns and drivers of those choices of women patients, but also to serve as an ex-ante strategy for extrapolating results towards providing evidence for practice. The days between onset of symptoms to treatment (OT) was used to stratify the sample into: Other participants in the study were: In addition, a smaller sample of male patients with VL with OT of 28–50 days and > 50 days was selected and investigated as a form of quality control, to compare the findings related to female patients and thus remain open and alert to alternative explanations for themes that emerge for female patients. The total sample size was a trade-off between that which would sufficiently answer the research question and capture a range of experiences, without being too repetitive, and what was feasible. Sampling for patients with VL was done in three stages. In the first stage, 12 blocks were selected as study sites using the Kala Azar Management Information System (KAMIS) national surveillance data from 2015–17, based on the relative distribution of the disease burden between Bihar and Jharkhand. Two blocks each from four of the 10 highly endemic districts in Bihar and one each from all four endemic districts in Jharkhand were selected, using the following criteria: Of the 12 blocks selected, all met the above criteria aside from one, which met the first three but did not have cases with OT>50, which was selected for logistical reasons. S1 Table gives the details of selection criteria listed above for the blocks that were selected for the study. In the second stage, a list of patients with VL aged 18 years and above were obtained from the selected blocks and organized by age, caste and OT, and samples were chosen for each of the OT categories of female patients, ensuring those belonging to SC (in Bihar) and those belonging to ST (in Jharkhand) were included. Additional samples were selected as backup. One male patient–with either moderate or late access–was selected from nine of the twelve blocks chosen. In the third stage, field teams obtained identifying information of these pre-selected patients from the surveillance register maintained at the block level by the KTS, along with details of those with confirmed VL who had died before treatment. Where the pre-selected patients were not traced, new cases from September–December 2017 were included. The final sample included 45 patients: 10 women with early access, 10 women with moderate access, 13 women with late access, 3 men with moderate access, 6 men with late access and 3 who died from confirmed VL. The deceased include two men and one male child, and interviews were conducted out with the wives of the male patients and the mother of the child. In addition, the following non-patient participants were selected: 11 KTS, 11 local providers and groups of community members in 12 communities. Table 1 gives the distribution of the sample across study units: Field teams carried out in-depth interviews using field-tested semi-structured guides that probed for factors affecting care-seeking, circumstances around each decision and sought to construct a timeline for care-seeking. Similar tools were used to carry out in-depth interviews of the KTS, local providers and focus group discussions in communities to explore trends in care-seeking patterns and their perspectives on factors affecting decisions about care-seeking. Data collection teams consisted of an interviewer/facilitator, note-taker and a manager. Data was collected between December 2017 and January 2018. Transcribed data and field notes were translated to English and coded in NViVo 8, along with analytic reflective notes of the principal investigator, forming and refining categories as the coding progressed. Data was further compared and contrasted to discern conceptual similarities as well as outliers and refine the distinctions between categories until a theoretical framework emerged. The study was approved by the Ethics Review Committee of the Foundation for Research in Health Systems, Bangalore, India. Written informed consent was obtained from all participants in the study. Standard procedures for maintaining patient confidentiality and data privacy were followed. All human subjects were 18 years of age or older.
Of the 33 female patients sampled, 23 were from Bihar, with equal numbers having early, moderate and late access; while 10 were from Jharkhand, of which half were those with late access. Women from SC communities was predominantly from Bihar and those from ST communities from Jharkhand, in line with the overall distribution of communities in the two states. Seven out of ten women with late access were from ST communities while two of the three deceased were from ST communities and one from OBC community. Of the nine male patients sampled, four were from OBC communities, three from SC and two from ST communities. About a third of the female patients lived 15 km or farther from the nearest primary health centre (PHC), while two-thirds of the female patients were either landless labourers or worked on non-irrigated land of their own. All women with early access, nine out of ten women with moderate access and nine out of thirteen women with late access lived in houses partly or fully made of mud. A conspicuous observation was the abject poverty of most of the participants and their living conditions, such as inadequate warm clothing to protect against the cold weather. Fig 1 gives the distribution of patients by OT. A striking finding in the study was that many patients and their family members did not consider VL as a possibility, even after weeks and months of having the symptoms, and after having rounds of unsuccessful treatment. This appeared to be despite having experienced a case of VL in the immediate or extended family, within the neighbourhood or even having been treated for VL themselves in the past. Others reported that they learnt about VL through awareness activities that were held in their neighbourhood, and could recite the salient features of the disease, and yet did not suspect VL in themselves. In an extreme instance, the husband and mother-in-law of a woman with late access had suffered from VL in the previous 2 years and yet she did not suspect VL in herself, but went from self-medicating to several private facilities and a traditional healer before ending up at the local government facility. Others who had prior knowledge of VL, including those who have had VL in the family or in their neighbourhood, stated that they would have gone to the government facility earlier and “not run here and there for treatment”, had they gotten a clear indication earlier that they were suffering from VL. Levels of awareness in communities ranged from comprehensive knowledge of causation, transmission, treatment and prognosis, to just knowing that VL is a killer disease. Misconceptions were few and not widely reported, and they include the belief that VL is caused by evil spirits and that it spreads through coughing. Several patient-participants stated that they had not heard about VL prior to falling ill, but picked up the basics from staff at the government facility during treatment. Several non-patient participants stressed the need for creating more awareness, while others felt that public awareness was already high. All patient-participants were confident to encourage others with similar symptoms to seek care at the government facility if symptoms persisted.
The overall care-seeking pattern shows similarities across male and female patients and those with early, moderate and late access: Initial self-medication, followed by repeated visits to or by the local provider, and visits to one or more private facilities, the last of which diagnosed VL and encouraged them to reach a government facility. Perceptions about the severity of the illness, lack of money, not having a male relative in the home and having the male of the household migrating for work drove early treatment choices. These factors also decided how long each of episode of care-seeking would last. This pattern appears to have been more drawn out for women and men with late access, but not for those with early and moderate access, depending on which of those factors were present. Some went to a government facility early on, but were not tested for VL. Fig 2 below depicts this typical pattern, along with some variations. The government facility is not typically an early choice, but those who did attend one within two weeks of the onset of symptoms were not tested or had a negative test. Without a clear follow-up plan, they went back to treatment shopping. It is unfortunate that patients that reach the public health system in highly endemic districts for VL are not offered advice about the possibility of persistent fever being VL and the important to return for follow up, and it represents significant missed opportunity. At least three options emerge as changeable drivers to expedite care seeking behaviour of women in the short to medium term, as indicated in Fig 4 below. The study has some important limitations that need to be considered. Primarily, the sampling frame was taken from the national VL surveillance register, which means that patients that were either not reported or not recorded in the register, such as those receiving diagnosis and treatment entirely in the private sector, were not considered in the sampling frame–although recent studies show that underreporting is low [2]. Secondly, the study was limited to high endemic blocks, where presumably the knowledge and awareness of VL is higher than in moderately and lower endemic area, where the results of this study cannot be extrapolated. Finally the small sample of male patients makes comparative analysis and thematic saturation for male patients difficult.
India bears the greatest burden of a fatal parasitic disease called visceral leishmaniasis (VL), popularly known as Kala Azar. The disease is confined mostly to hot spots in Bihar and Jharkhand in the eastern part of the country. Amongst factors hampering efforts to eliminate VL are delays from the onset of symptoms to the time patients are diagnosed and treated, where disease transmission is thought to be greatest and longer delays result in poorer outcomes; this is considered to be a particular problem in poorer women living in rural areas. This study found patterns in careseeking: initial self-medication followed by multiple visits to local (unqualified) providers and visits to private facilities, before ultimately reaching the public health facilities where treatment was freely available. Those who did attend public health facilities early in their illness were not tested for VL nor followed up with a possible diagnosis of VL in mind. Female patients tended to under-estimate the severity of their illness, while social and economic reasons also influenced care-seeking behaviour–particularly the lack of a male relative in the house, and a reluctance to utilise already meagre resources. The conclusions of the study were the need to encourage women with persistent fever to seek care without delay, while ensuring that factors that serve as barriers, such as low prioritisation of women’s health by households (and the women themselves) is countered by messages emphasizing the danger of delayed treatment for VL and the low time-cost burden of availing care within the public health sector. Improving awareness of VL amongst informal and formal health providers remains key in this process.
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“It’s just a fever”: Gender based barriers to care-seeking for visceral leishmaniasis in highly endemic districts of India: A qualitative study