In rural India, people are hiding their Covid-19 infection because of mistrust in the health system
In an interview, two doctors describe the gaps in rural health infrastructure amid the second wave of the pandemic. The number of Covid-19 cases is easing off across India but not as rapidly in rural as in urban India. Some numbers themselves are under a cloud, particularly in areas where the quality of reporting is not good. A recent Centre for Science and Environment report said that rural districts had seen almost 52% of Covid-19 deaths and 53% of new cases in May 2021, based on a sample study. It also said that community health centres in rural districts needed 76% more doctors, 56% more radiographers and 35% more lab technologists, which illustrates the nature and extent of the problem. To understand what India can do to improve hard and soft infrastructure in rural areas, we spoke with two doctors who have been working on some of these challenges. Rajani Bhat, consultant pulmonologist from Bengaluru, is a postgraduate from the Albert Einstein College of Medicine in New York and an American Board of Medicine-certified doctor in pulmonary diseases and critical care medicine. Pavitra Mohan, based in Udaipur, is co-founder of Basic Healthcare Services, a non-profit that has been working primarily in southern Rajasthan. He has an MBBS and MD from Delhi University and a master’s in public health from the University of North Carolina. He has worked extensively in community-based primary health care and nutrition. Edited excerpts: Dr Mohan, as you look back over the past two months of the second Covid-19 wave, what can you tell us about the behaviour of the virus and people’s response, particularly in rural India? PM: One thing is clear that the virus has spread much more rapidly in this wave compared to the past wave and there have been no divides between urban and rural, or rural and deep rural, or deep rural and tribal areas. The infection has spread in the [remotest] areas, which was not the case the last time. So in some ways, it is actually the first wave for the deep rural and tribal areas. Last year, there was no wave for them, it was largely restricted to urban areas. Some spread happened when the migrants started returning. After a month [of nationwide lockdown], when they were allowed to come back, there was a slight surge, but it was not really a wave, it was probably a small ripple. So for [deep rural areas], it is actually the first full-blown wave. The virus has spread much more and much deeper this time and has not followed any boundaries of urban, rural or tribal. The way people have responded to [the second wave] has been guided by a lot of fear and also a lot of mistrust of public healthcare systems. I think this led to a situation where the combination of fear and mistrust meant that people stayed indoors. They would not go out to access healthcare, and especially not from the public healthcare systems at all. They would seek care from whatever was available closer by, but avoided the public healthcare systems in general. This is the scene in areas that we work in. I’ve heard similar things from other people working in similar rural and tribal areas elsewhere. [Where did] the mistrust have its origin? I think, in general, there has been a mistrust of the public system for a long time in rural areas, partly guided by the fact that services, especially curative services, have not been responsive. Wherever there are strong public health systems, that is not the case. There is greater trust and that continued. Advertisement The [mistrust] was further accentuated by the fact that last year when people, especially the migrants returning from the cities, were isolated and forcibly quarantined, that led to a fear of the government and public health systems in particular, and of the disease. [The fear was that] if you said you had Covid-19 or were found to have the disease, then you’ll be shifted away. This was of course fueled by social media, news and reports of people dying and all kinds of myths and misconceptions also being propagated through social media. But its roots lay in the distrust and the fear of being isolated and quarantined. Also, this time, when vaccination started in January before the second wave began, coercion was used to promote vaccination among those who initially had vaccine hesitancy. [Hesitancy] is not uncommon when you’re introducing a new vaccine, especially for adults. Vaccine hesitancy is common in all populations. But mistrust deepened because people were coerced and told that if they don’t take a vaccine, your name would be removed from old age pension or from the public distribution system. That mistrust, coupled with fear, led to a situation where people stayed indoors. They feared disclosing anything about the disease, or going to a public health system, which in any case they had limited access or response to. That led to quite a bit of delay or absence of care-seeking. A lot of people continued to be indoors even when deaths happened. When they had started slipping, they would still want to stay where they were rather than going to a government hospital in a far-off city. There are of course structural issues which were always there, of distances, of not enough money to reach a large hospital. But it was added to by fear and distrust. So people could have gone to a public health system and gotten a bed or oxygen if they needed it, yet they did not go? PM: That’s right. There are two scenarios here. One is people who had mild infections who did not really require to go to any [facility], but required support, advice and medication to manage Covid-19 at the household level, or in a setting where they could isolate themselves. Even accessing advice and support for home care is something that they resisted, because of the fear of being found out that they are Covid-19 positive and therefore being isolated and separated from the family. Even when frontline government health workers like ANMs or ASHAs would visit their homes, they would withdraw and not disclose [their illness] and would not want to even receive the medication or advice that was being given. In the second scenario, where people were moderately or severely ill and started slipping and could reach the hospital, the whole fear of going to a hospital was huge. I was in a debate where [people] were saying why is it that you did not see pictures of people in a hospital in rural areas asking for beds, or oxygen, etc. The reason is that they did not reach the hospitals and often would become severely ill [and] either recover or die at home. Advertisement Dr Bhat, tell us about your experiences in this context and the Covid-19 toolkit or resources you’re working on. RB: Dr Mohan has raised all the relevant points that come up in the challenges that we face in implementing science-based protocols, which are useful for the rural health set-up. There are so many challenges in terms of lack of infrastructure, manpower and training. Added to all that is the problem of mistrust and misinformation, which has been a huge problem not just in rural but also in urban areas. We’ve seen rumour-mongering and myths and fallacies spreading much faster than the solid scientific evidence that needs to be propagated better. In order to counter that, a group of us have come together to form the Swasth Community Science Alliance. It was born as an organic effort of clinicians and practitioners on the ground, along with physicians, scientists, health economists and people with experience in public health or global health. It is looking to address these challenges of how to help implement the best practices in rural areas where it is most useful. One challenge is that when we come up with evidence-based medicine practices, these are sometimes formulated in areas that have access to the best facilities. So, you put a cut-off point of say, [an oxygen] saturation level for which one must seek hospital attention. One has to keep in mind that there’s a lag time in rural areas, where it might take six to eight hours to reach that medical attention. One has to adapt evidence-based guidelines and protocols to take the kind of time constraints that people have in rural areas into account. Then there are the kinds of instructions that are available. Is it a medium of instruction that’s easily accessible to the ASHA and ANM workers who are embedded in the community, whom the people trust? What are the resources available? In response to the rising Covid-19 numbers in rural areas, we’ve seen a wonderful surge of support from community, corporates, nonprofits and charitable organisations coming to the aid of government health services, by providing material resources. You mentioned that India also lacks manpower and training. To that end, what we’re looking to do is provide a suite of toolkits that are easy to understand and access for people in rural healthcare services. This is an alliance in the truest sense because we are guided by serious experienced practitioners on the ground like Dr Mohan. It’s only based on the feedback of the challenges on the ground that we get from them that we are able to formulate certain training modules which can potentially help us to counter these problems. Can you illustrate the key communication areas that you’re focusing on? Do these toolkits apply uniformly across India or are there other situations that you have to adapt to? RB: There are definitely some parts which are universal and adaptable to all parts of India. In the conversations that we’ve had with people practising on the ground, be it from Maharashtra, or Nagaland, or Tamil Nadu or Karnataka, some challenges and practices remain the same across the board. Advertisement Our focus has always been on trying to make sure that we first eliminate any harmful practices. One challenge is that there’s been a lot of different medications and polypharmacy that’s been thrown at Covid-19. What we’ve learned over the past year is that the old gold standard practices, the best supportive practices for any viral illness, still hold true and that’s something that the system is ready to deal with. It’s just about removing misinformation and myths and enforcing what we can do and implement well with the people we have on the ground. In terms of challenges, they are universal, some are local, some degree of trust issues will be local, according to community practices. But that’s where the partners on the ground come in and help us. We have toolkits that will help us provide home monitoring services, so an ASHA worker or community health volunteer should be able to help families in their communities be aware of what to watch out for, and build trust in order to ensure that monitoring continues and is relayed to the medical officer they report to. The idea being that Covid-19 is a disease where the majority of patients are asymptomatic or mild. So early on when their oxygen saturation is dropping and in moderate illness, even if the district hospitals are overloaded, there is potential for having Covid-19 treatment facilities that can provide oxygen and basic medications and still allow for a much better outcome for patients. It’s really a sad state of affairs that we’re seeing patients not seeking help because of fear and mistrust, as Dr Mohan pointed out. That’s the part that we want to address. There is a large chunk of patients that we can help just by bridging that gap. Tell us one finding from your research or conversations with doctors across the country which surprised you and to which your toolkits or resources are responding. RB: One thing that surprised us is the fact that a lot of people think that complicated medications are essential. But we realise that [Covid-19 care] is really a lot about sticking to the basics. It’s about good monitoring of vitals. It’s about educating people about simple preventive practices, awareness about masking, early identification of symptoms, removing stigma and fear associated with the disease, doing symptom control with simple things like paracetamol for fever, simple practices like prone positioning for improving oxygen, these are the things that are really valuable. We know that it’s only in certain patients whose oxygen levels are low that you need steroids. So we are making sure that that kind of information is available, where you tell people that you don’t need these expensive medications, that it’s a very small minority of patients who need it. The part that’s been really important in our work has been to first propagate the do-no-harm practices, to not prescribe these drugs. And it’s really been heartening to see the DGHS (Director General of Health Services) recommendations that have come out recently and are very supportive of the best practices that have stood the test of time over decades.