While Attapadi has three different Indigenous communities, we did not find major differences between the three communities when it came to what mediated access to healthcare in Attapadi. While presenting our results we report the major themes that evolved with respect healthcare access and present the perspectives of the different stakeholders who participated in our study in each of the themes.
Marginalisation of Indigenous culture and healing traditions
The understanding of healing and disease in most formal health systems follows a biomedical framework where health and illness are defined primarily from a clinical perspective. While this dominant model has come to characterise most health systems across the world, the significant role played by culture and beliefs regarding healing and causation of ill health especially among Indigenous communities is well known. The Indigenous communities in Attapadi took a holistic approach to life and health which was rooted firmly in their cultural tradition. While discussing healing and health, Indigenous participants would often link the environment, their food and their connection to their ancestors as essential for good health.
One key aspect of the Indigenous healing traditions in Attapadi was that everyone was expected to know about the uses of different herbs; healing was not considered a specialised skill practised by a few healers or shamans. For example, instead of a traditional birth attendant, the husband was expected to take responsibility to assist at the birth of his child. with this knowledge passed on from father to son. Only in case of complications during childbirth would the husband find someone else to assist him.
However, several participants described how traditional healing had been superseded by the modern health system. Village elders showed MSG various medicinal plants and explained their use. The community felt that outsiders, in particular the health department staff, not only ridiculed their practices as ineffective superstition, but also strongly discouraged their use. This eventually has led to the decline in the use of traditional medicines among the Indigenous communities. They also described how their younger generation were not interested in learning about, these traditional medicines. Some of the community participants felt this decline in use of their traditional medicines deprived them of first-line remedies that their communities practised for several ailments. While the local health system felt such first-line remedies hampered the provision of “good quality” healthcare, communities that lived in remote locations pointed out how the knowledge and use of such traditional medicines were an important part of their lives and not using them rendered them more vulnerable.
“If we use any of our traditional medicines and anyone in the health system comes to know about it then they will scold us for it. But when we are living so far away from the health facilities, we need to use our medicines. At least as a home remedy, at least as a first line treatment.”
Indigenous community, IDI, TK 2
“Our healers they used to treat so many diseases. In those days our ancestors had to go and hunt in the forest for food, and what do you think they would do if they were bitten by a snake? They had to find ways of healing themselves. There were no hospitals like we have now. Now very few people use any of our herbs. In fact, many of us don’t know about it.”
Indigenous community IDI, TI 13
Health system participants were generally unaware of local cultural beliefs about healing and did not consider this to be relevant to services they provided. The general understanding was that these practices were superstitious at best and, harmful at worst. Beliefs and practices around the significance of birthing on country, death etc. were considered as impediments to the delivery of effective healthcare services. There was no acknowledgement of the need to integrate local beliefs into the health system’s practice so as to provide culturally safe and respectful services. One of the observations during fieldwork was how husbands of pregnant women from the Indigenous community would not cut their hair till the child is born and named. Some of the doctors pointed this out as an example of the lack of hygiene among the Indigenous community and how they did not stop this in spite of being told. Community participants on the other hand explained that this was part of their culture and an expression of the husband’s affection towards his pregnant wife. Yet another example was the fear of being referred to a hospital outside Attapadi was present among the community especially among the elderly. It was common to find the elderly refusing to access healthcare and remain in their villages despite efforts to convince them to seek care. This was reported as a barrier to providing good quality care by the healthcare professionals. Two major reasons for this behaviour were the commonly held belief among the elderly that once they leave the hills of Attapadi and go far away, they were no longer under the protection of their ancestors. Secondly, the community also observed that many of those who had been referred to places outside of Attapadi in the past did not survive. This might have been due to the fact that most of those referred were already in very poor health to begin with. However, it left a negative impression among the community and reinforced their beliefs that it is not safe for them to leave the hills of Attapadi to seek treatment. Doctors referred to such beliefs as an yet another example of superstition which had to be rooted out and did not engage on this issue with the community. The failure to understand and appreciate the important role played by culture in the lives of the Indigenous led to situations where the community resisted well-meaning advice offered by healthcare providers.
Quite contrary to the approach at Attapadi, we found that successful Indigenous health projects in India proactively tried to understand and integrate culture as a part of the approach to service delivery. One of the key informants who worked for a very well-known Indigenous health project in another part of south India pointed out that adapting healthcare delivery to Indigenous culture was important.
“Culture is very important when we deal with Indigenous communities. For example, the betta-kurumbas have a practise where, when a woman goes into labour all the women from the village gather around the house. It is like a way of showing solidarity with the girl who is about to deliver. When we realised this, we had negotiations with the community and agreed to let their women gather in the meeting room and not outside the labour room. As a result, we were able to get more people to come to the hospital to deliver and they were also happy that we took into respected their traditions.”
Key Informant, IDI, KI 5
Such openness to Indigenous culture and traditions and the ability to negotiate and arrive at approaches that was culturally sensitive while being clinically acceptable was grossly lacking in the local health system at Attapadi.
Lack of community engagement
Several village chiefs pointed out that no one ever asked for their opinion regarding healthcare provision for their community. They felt that given their ‘illiterate’ status, doctors and other health professionals did not see their views as important. Healthcare staff did not inform village chiefs even when a MMU visited a village. They failed to use this as an opportunity to actively engage the community. MMUs would generally arrive at the villages after most of the community had left for their daily work. Village chiefs who were interviewed pointed out that if they knew details about the mobile medical unit’s visit to their villages in advance, they could discuss it with the community and convince them to stay back in the village for that day. The exclusion of village chiefs and their councils - the traditional decision makers, was common across all programmes. Furthermore, a senior staff member from one of the health facilities revealed that while there was a hospital management committee with Indigenous representation, it was more focussed on the development of the hospital than on improving community engagement. This approach contrasted with the custom among the Indigenous communities where all common issues had to be discussed in village meetings by the community and decisions arrived at.
“Even though I am the village chief (moopan), nobody has asked me anything so far. Even the doctors who come here on medical camp they don’t ask me for my opinion. They do things as they think is best. Our opinion is not taken.”
Indigenous community FGD, TK 12
This lack of community engagement lead to initiatives with no value either to the community or the health system. Such initiatives gave the impression to outsiders and higher officials that efforts to promote community engagement existed, but in reality, these were nothing more than symbolic gestures undertaken as tick-box exercises. Another example was the feedback system provided at the tribal speciality hospital. None of the participants who had received hospital services knew about its existence. Furthermore, the feedback form was in English and Malayalam two languages that most tribals do not read. One of the doctors interviewed acknowledged that the form was more for the record of the external evaluation team that assessed the hospital. The exclusion of the community from decision making processes carried out by the health system added to a lack of belonging that the Indigenous communities felt about the health system. A key informant who headed a well renowned tribal healthcare initiative in south India pointed out that unless there was strong community ownership, interventions carried out among the Indigenous were bound to fail.
“Here the golden rule is that everything has to be discussed with the community first; we have to take them along. It is not easy; it slows things in the beginning. But unless the community is on board, our work not going to succeed in the long run.”
Key Informant, IDI, KI 3
Centralisation of healthcare services
A network of healthcare institutions with trained staff and appropriate infrastructure was present in Attapadi (Figure 1). In spite of this, most healthcare services including ANC were provided only at the tribal speciality hospital. The general trend among healthcare professionals at the Primary Health Centres (PHC) and Community Health Centre (CHC) was to refer patients to the tribal speciality hospital. When asked why they did not treat them at their facilities, doctors explained that this was because the tribal hospital had specialists and better facilities. In contrast community members described being afraid to go to big hospitals away from their homes. Many described feeling disoriented in the tribal hospital, a large building with several rooms and offices. Even more worrisome was the fear that they would be referred outside Attapadi for treatment to a bigger hospital. Some of the participants shared stories of how they had travelled for several hours to reach the hospital, even though there were other health facilities closer to their villages.
“If someone falls sick in those villages, we are expecting them to come to the hospital which is so difficult to reach.”
Healthcare Provider IDI, TP1
“Here in the PHC they won’t do anything, for anything we have to go to the tribal hospital at Kottathara only.”
Medical Officer FGD, TI 10
A fallout of the trend to centralise healthcare services in Attapadi, was how other facilities such as sub-centres, PHCs and the CHC were being neglected despite possessing excellent infrastructure and adequate healthcare personnel at these centres. Additionally, this also led to overcrowding at the tribal speciality hospital compromising the time available per patient for diagnosis and treatment thereby affecting the quality of care delivered.
Forced compliance
In efforts to improve community access, the local health system tried to enforce compliance with its programmes and initiatives. Pregnant women were required to make monthly visits to the tribal hospital in Kottathara to receive ANC care. This put many pregnant women, especially those who lived far away, into great difficulty. The community did comply with the requirements of the health system, but primarily from fear of the negative consequences of non-compliance. They felt that the health system was unable to appreciate the context of their daily lives implementing interventions that were disruptive. Healthcare providers stated that they acted as they did for the community’s own good. Forced compliance also had a negative impact on the work of community health workers who explained that such incidents made their work difficult as they lost community trust.
“Now if they know there is any pregnant woman here then they will keep a note of it and before the time comes, they will come and take them away. Even if you go and hide in the forest they will come and take you to the hospital. Even one month before your date they will take you away even if you are not happy with it.”
Indigenous community IDI, TI8
Closely linked to this enforced compliance, was the fear expressed by the community about receiving inpatient care at the hospital. Doctors found it difficult to communicate effectively with their patients and the community resisted some of the efforts of well-meaning doctors to provide certain services for them. The lack of trust among patients was discussed by some of the doctors who felt that their experience in Attapadi clearly exposed a gap in trust between the healthcare providers and the community.
“The sight of the labour room makes them worried; they get very scared; I have seen that”
Medical officer IDI, MO 1
“Now I won't go, I am alone, it is scary to go alone and stay in the hospital.”
Indigenous community IDI, TI 8
“They will never cross a certain line and get close. The personal touch and trust that should characterise a doctor patient relationship, I find it is missing here completely.”
Medical Officer IDI, MO3
Fear was also expressed by the community about being referred out of Attapadi for any treatment.
The topic of fear was also brought up by health system participants in the context of working in Attapadi. Doctors in particular pointed out that negative media coverage that followed incidents such as infant or maternal deaths, made them very cautious about treating cases especially related to maternal or child health. Doctors were of the opinion that if something went wrong, they would have to face the consequences and higher officials would not back them up. Hence, they referred complex cases to another centre even if it was located outside Attapadi so that they did not face any trouble in case something went wrong.
Stigma and discrimination
Most participants described feeling discriminated against by the health system. This was reported by community members who had received health services, and by Indigenous staff members in the health facilities. Community participants described the condescending manner in which non-Indigenous staff engaged with them at the health facilities. Indigenous healthcare workers also noted that they were treated differently by the non-Indigenous staff. One participant who had resigned from her job because of this, explained that it was distressing to be constantly seen as different. Some participants felt that the image of a tribal as an “uncivilised savage” still persisted. Even though such attitudes were not stated explicitly, the community was unanimous that they were stigmatised by the dominant community, including the health system. It was significant that not a single Indigenous participant, expressed a sense of belonging and ownership about the health system.
“I left because they used to see us tribal staff differently from the others. I did not like it, so I quit my job.”
Indigenous community IDI, TM8
“Never once did I feel this is “our hospital”. The reason is because they never see us as part of them. And neither have I felt that. They differentiate.”
Indigenous community IDI, TK 4
Most of the non-Indigenous participants from the health system were not willing to accept that there was stigma or discrimination against the Indigenous community. They felt that everything was provided for the Indigenous communities and they did their best. Indigenous community members also agreed that direct acts of discrimination were rare, but they could sense unconscious bias which took shape and form in some of the language that was used by healthcare providers.
Addressing the broader determinants of health
One of the key themes that emerged from the community was how the loss of their lands and restricted access to the forests impacted their ability to have a nutritious diet. The loss of lands and the resulting marginalisation of the Indigenous community in Attapadi has been long acknowledged by several governments in Kerala. As a result, many of the Indigenous community members are unable to grow their own food which was the custom in the past. Furthermore, with forest laws that in effect prevented communities from hunting small animals for food- a practise that they were used to for generations or go into the forest to collect roots and other produce freely, access to several sources of food was curtailed. Older community members spoke of the special diets provided in the past to pregnant women. Specific wild root vegetables were eaten to improve the health of the mother and their unborn child. However, access to these nutritious diets has declined over the last four decades. Despite several processes set in motion by various governments, most of the lands have not been restored to the Indigenous community, depriving them of the chance to cultivate their own food as in the past. As noted by one of the doctors, it is unrealistic to leave aside socio-cultural determinants of health and expect clinical solutions alone to address community health issues.
“Whenever people talk of health, I ask them about our land. Unless we eat nutritious food, how can we be healthy, what is the use of these big hospitals?”
Key Informant IDI, KI4
“Let’s say for example you are bringing in a 20-year-old girl for delivery and I have seen girls who are secundigravida at that age. Even if it is a primigravida the weight of the girl will be like 37 kgs. Now you tell me, how can I in a short time make her deliver a baby that is above 2.5 kgs.? For that to happen I should be sitting here and doing some magic. That is why I say you can’t just do these things sitting here in the hospital.”
Medical officer IDI, MO3
The lack of progress on the social determinants front meant that structural inequities continued to be a feature of the Indigenous communities living in Attapadi.
Financial protection alone did not improve access
All healthcare services including referrals to tertiary institutions outside Attapadi were free for the Indigenous community post 2014. In addition to direct costs, indirect costs such as those for transport, food, medicines, loss of wages for an accompanying carer, were all addressed by a special renumeration package. The STDD also implemented schemes to ensure that indirect costs incurred from accessing healthcare services were reimbursed. Additionally, financial incentives were offered in order to promote ANC and hospital deliveries. All participants were aware of the renumeration available, and that they did not have to pay for any care received. Yet access to healthcare was not universal.
“No, it is not a burden. In fact, we used to pay for the transport and all. For ANC too we are paying. For attenders we pay, we give them free food when they are here. We pay something that is the equivalent of a day’s wages.”
Medical officer IDI, MO1
“Everything was free of cost we did not pay anything for his treatment. They gave us food there itself and also for the attender they gave 100 rupees per day.”
Indigenous community IDI, TM7
Key informants described the current approaches and debates around provision of UHC in India as inadequate, having narrowed their focus to the provision of financial protection in the form of insurance packages linked to clinical services, provided through a network of public and private hospitals. This they felt would not be adequate to ensure truly universal healthcare access, however in the face of a global initiative such as UHC, there was a lot of pressure to implement an insurance-based financing mechanism as the way forward. All KIs emphasized the need for decentralising of both planning and the process of conceptualizing the barriers to access and solutions that needed to address them. One of the errors of global initiatives such as UHC was to universalise one intervention and expect diverse populations to respond to it in the same manner.
“I do think that the present approach to UHC is flawed as it is mostly a focused-on hospital-based care.”
Key informant IDI, KI 1
“What we need to do is to universalise access, for this we cannot universalise one intervention as the context in Attapadi differs from the context in a big city. So how can you say that one broad approach will ensure access for all?”
Key informant IDI, KI 2
“You cannot import something from outside and expect it to work with an indigenous community”
Key informant IDI, KI 3