Healthcare providers frequently struggle to provide effective care to patients with chronic Lyme-associated symptoms , potentially causing these patients to feel misunderstood or neglected by the healthcare system. This study is the first to use a combined medical and communication science approach, and aims to assess patients’ experiences with CLD & CLD-related care, identify themes and repertories in these patients’ narrations, and provide potential ways to improve communication with them.N = 15). We asked participants about their experiences with CLD and CLD-related healthcare. We performed thematic analyses using a bottom-up approach based in discourse analysis. We also sought to identify specific types of verbalizations (repertoires) across themes.Informed by the principles of ‘clean language’, we conducted focus groups with self-identified CLD patients .Central themes found in CLD patients’ communication are 1. the experience of significant symptoms, 2. for which adequate relief is only rarely found from conventional medical practitioners, and 3. that are largely invisible to the outside world. Verbalizing these themes, patients use various repertoires for their shared experiences, such as a feeling of abandonment or not being heard by the medical system, feelings of loss with respect to their previous health, and the idea that they might have been better off had they been diagnosed sooner. Working with these repertoires will enable healthcare providers to establish a shared perspective with their CLD patients, thus engaging in more fruitful doctor-patient communication. We hypothesize that these findings are not unique to CLD, but may also be applicable to other conditions with an uncertain aetiology, such as Long COVID.The online version contains supplementary material available at 10.1186/s12875-022-01736-5. Borrelia infection, also known as chronic Lyme disease (CLD).Most healthcare professionals – and general practitioners in particular – will have encountered patients with chronic symptomsBorrelia infection  No-one sees this about you, because it is like a sort of invisible handicap.Participants indicated the unpredictable nature of their illness, experiencing alternating periods of feeling better and feeling worse. They also described their experience that CLD manifests itself in very different and unique ways from person to person, for example with respect to symptoms, modes of treatment that work or do not work, or the course of the illness. Many participants mentioned the invisibility of their symptoms, either as inherent (i.e. that they cannot be readily seen on the outside), or resulting from efforts to make them invisible (i.e. to prevent subjecting themselves to perceived ridicule or unhelpful attitudes).P9: You try to keep going, to keep a job, but besides that there is little you can do. No more fun things; social contact is practically impossible. You’re too tired for everything, but you always try to keep your job and your family going.P14: I couldn’t even alphabetically organize things [for P14’s work] because I couldn’t come up with how the alphabet goes. […] There were days where I felt completely hopeless. Everything I had worked for, I had lost. […] Right now, I’ve recovered completely. But there were days where I thought: “What if this is the rest of my life?”Participants discussed the impact of their symptoms in a variety of situations and contexts. They clearly differentiated between their situation before and after the onset of their illness, describing changes in their daily lives  they were forced to make because of their illness. Participants’ symptoms and their impact evoked a variety of emotions: they described sadness and grief, but also anger.P9: If the GP had asked something, then I would have remembered. If he had asked: “Have you been in the woods, have you had a tick bite?”, then I would have [said]: “Yeah, I did have a tick bite.” And then maybe, well, then you hope that it had been treated at that time. But that didn’t happen and he didn’t ask.P2: You go to a doctor with the anticipation that they are going to make an effort for you, but along the way you notice that they have their own interests and ideas, and if you don’t fit into their frame of reference then you can go. Yeah, the doctor is only insulting.Participants would highlight their initial visit to a regular medical professional with respect to CLD as significant. Because of the organization of the Dutch healthcare system, patients’ quest for relief from their illness commonly starts at their general practitioner (GP), who may either diagnose and treat a patient, or may refer to specialist care in hospital. Various participants had negative experiences with their GP, with some saying they completely avoided their GP or stuck to a purely business-like relationship. However, feelings of disappointment and frustration were far from unique to general practice. Virtually all participants had some negative experience with medical practitioners.P1: They only look at that one thing, […] but all that time no-one looked at the entire picture.P18: What I think is a pity, is… you go through a lot in a short while, all sort of things happen, and, uhm, there’s a doctor in front of you who doesn’t want to hear it. Look, when you try to describe a symptom, you experience that for the first time, you also don’t know what the medical term is. You try to describe something, but you just notice that the other side of the table is completely disinterested.Participants discussed what they missed or had wanted to see in the care from their GP or other treating physician. Though some acknowledged that GPs cannot possibly know all there is to know about every disease, many participants did note a lack of knowledge on the part of their doctor about the intricacies of Lyme disease. At the same time, they wished for a doctor who took a more holistic approach and looked beyond their own expertise. Some participants expressed regret that their doctor did not believe that certain symptoms were caused by LD, while –conversely– others expressed regret that their doctor attributed all their symptoms to LD out of a perceived ‘convenience’ to do so, rather than look further what potential other causes may underlie them.P1: Well, they can’t find anything so it must be ‘between the ears’.Several participants said they had been referred to psychologists, either when their doctors could not find an organic cause to their symptoms, or concurrent with further somatic work-up. Some viewed this in a positive way, others negatively, specifically when they suspected the referral stemmed from an apparent inability to diagnose their case.P11: [My strict diet] gives a feeling that you have a bit of a grip. If that’s true or not, doesn’t interest me in the slightest. It just like…P8: That at least you’re doing something about it.P11: Exactly, and that feels good.P8: It gives you power.P11: It gives you a bit of control too.Participants also mentioned seeking healthcare options outside the context of regular medical practice. They indicated that they sought out these complementary or alternative medical (CAM) practices in part because it gave them some control over their situation after being disappointed by regular medical professionals.P11: In [my family’s] mind, I’m like the princess on the pea, because yeah, I always have something. I don’t have much left. I have a few good friends, who I’ve known for 30 to 50 years, who know about it, and to whom I can say “Well, I’d love to go to that birthday, for example, but I can’t make it.”While many experiences about healthcare professionals were neutral to negative in nature, their interactions with peers  were very varied. Some participants described feelings of not being understood or making their symptoms invisible: pretending that nothing is the matter so as to not expose themselves to insensitive or unhelpful attitudes. Others experienced great support from their peers, even remarking that other people opened up about their own personal problems after the participant told them about their CLD.P11: I saw something on TV once, some clips of someone who was in bed, completely passed out, and this and that, and I thought: ‘This isn’t me, this is not what I want to be’, so I shut it off.P16: The [patient organization], I telephoned them. And that shocked me terribly. I called them, and I think I spoke to a very young person, and I talked about some mild complaints, not at all extremely serious, and in her second sentence she advised me to start taking antibiotics just on my own. So yeah, that shocked me a lot.Participants also relayed their interactions with other CLD patients. These sometimes took place in person, but more often were conducted online. Some also took place within the context of the patient organization. Participants indicated that they would also read or hear about other CLD patients’ experiences. Participants appreciated the mutual support and recognition between CLD patients, while some also reported being emotionally affected or even frightened by the seriousness of others CLD patients’ condition.what participants were saying, but also at how they were saying it. From this, we can hypothesize what perspective (or framing) is implied by these verbalizations. For these analyses, we looked at the first four (clean language) focus groups only.As mentioned previously, we did not only look at Table impersonal you, other presuppositions, and affirmative elaboration. These language devices are explained and illustrated in the next subsections.By using such repertoires, participants express and create common ground. They achieve this by using particular language devices that are commonly (and unconsciously) applied to represent experiences in terms that converge both individual and general aspects: je), both in describing their own experiences, and in reacting to others’ descriptions.P14: I had exactly that. [You can explain to the doctor] just two complaints, and then you get cut off, and then it’s, uhm, okay. But then I think, I have a list of complaintsP9: Yes.P5: Yes.P14: You just get, just get stopped.P9: Yeah, […] you’d think that they have to know the entire story.The second person singular usually refers to a specific other person  P2: Yeah, that feeling of ‘here we go again’.P10: And of course, the bite mark disappears.P1: Yeah.P10: It disappears and you never see it again.P3: Short-term memory is really, uhm, very annoying. So, you come up with tricks for that.Essentially, impersonal “you” presupposes so-called common ground, but it is not the only language tool for participants to do so . In genenication , 42.P8: Here, P10 describes her own experience with a fading tick bite mark but phrases it as to imply that this happens to everyone, and follows up this statement with an impersonal second singular. P3 similarly describes her own memory difficulties but phrases it suggesting that her problem is a problem shared by CLD patients in general.A final observed means of creating common ground was frequent affirmation of what previous speakers have said. In a focus group, participants are neutrally invited to react on what others in the group say. A striking finding in our data is that participants –even those with divergent illness severities and durations– almost invariably actively confirmed the experiences which other participants narrated. We counted the speaking turns from the first four (exploratory) focus groups in which a participant agreed with another participant as a proportion of the total number of speaking turns by participants. While we must be careful in drawing conclusions without robust data on the ‘natural’ occurrence of agreement versus disagreement in group conversations, we think it is important to point out that as much as 256 speaking turns were found containing explicit agreement with another speaker and 369 speaking turns containing implicit agreement . This translates to 12.7% (256/2016) and 18.3% (369/2016) of total speaking turns, respectively. However, if we only look at the 733 speaking turns that entail an actual interaction between participants and/or the moderator, we find that over 85% of those interactions are explicitly or implicitly affirmative . Conversely, only 3.8% (28/733) of interactions entailed an explicit disagreement with another speaker, while the remaining  were other types of interactions such as questions or discourse markers. These frequencies were consistent between the four exploratory focus groups. This may be explained by the tendency of participants in a conversation to take their turn at a point where they can agree and, as they generally have a preference for agreements and acceptance and to avoid disagreeing with another . This tyP10: You’ve had it for so long […] that you know very well….P3: YesP10: …what’s the matter with you.Mod: Okay, that…P10: Like, I know this, this is Lyme.P3: Yes.P4: Yeah, exactly.Interestingly, though several participants believed that CLD is a very heterogeneous illness (implying that experiences are not shared), they actively created and found common ground within the heterogeneity of their experiences.you get into the suicidal state, there should already be help, at least psychological help.P14: Long before P12: And recognition…P14: Because I think it really comes out of desperation.Yeah, not being heard.P12: Yes, and feeling all alone and no perspective.P14: In the excerpt below, all three phenomena of common ground construction come together. In this particular fragment, participants discuss a journalistic article about suicide among CLD patients (emphasis added in bold):what these experiences are, but also how these experiences are verbalized.Our study was the first to explore the experiences of CLD patients by using clean-language-based focus groups, assessing not only Participants reported a heterogeneous set of symptoms, except for fatigue, which was experienced near-universally. Reported symptoms  were largely non-specific for any particular disease, and are also frequently seen in post-infectious syndromes such as Long COVID , in fibrMany participants reported negative experiences with healthcare providers and divergent experiences with people in their social environment, in line with previously reported findings on CLD , 15, 25.with others and validation by others, specifically by practitioners in the healthcare sector. This is reflected in the frequent impersonal use of ‘you’ and in the many mutual affirmations expressed by participants. This is by no means unique to CLD or contested illnesses: use of impersonal ‘you’ in a healthcare context has been observed in patient descriptions of experiences with breast cancer .” Mindful of both the repertoire regarding the perceived loneliness of CLD patients and the risk of getting stuck in a disabling narrative, this counselling could very well take place through peer support groups guided by a dedicated healthcare professional. While we are not aware of any trials assessing the efficacy of such facilitated support groups, these were at least suggested for other chronic conditions –61.On a final note, it seems almost superfluous to point out that an uncompassionate or even disrespectful approach by healthcare providers greatly reduces the efficacy of the care that they provide, or is even counterproductive. While we could not check the veracity of any of our participants’ experiences, it is evident that even those with relatively short-lived symptoms reported disappointing encounters with medical professionals with respect to CLD. It may also be insightful for clinicians to realize that some of the strain in the doctor-patient relationship with respect to CLD, may stem from frustration over the inability to properly diagnose a patient’s case, and that some clinicians’ out-of-hand dismissal of certain symptoms as non-somatic essentially shifts the blame of this non-diagnosis from the doctor to the patient . We woulOur study is a first effort to assess CLD patients’ experiences through focus groups and the first to include a linguistic analysis. Unfortunately, circumstances forced us to accept a minimum number of two participants for a given focus group, which limits the breadth of experiences and the possibilities for interaction between participants. We do point out that all focus groups generated homogeneous data, suggesting that experiences across all focus groups (including the one with only two participants) were similar. We must also be careful in drawing conclusions based on the relative frequency of mutual affirmation, presuppositions or informal you. With little or no research on the ‘natural’ frequency of such linguistic phenomena, it is difficult to state conclusively whether the observed frequency is significantly higher than normal. Similarly, we are also careful in attributing the looping effect that we hypothesize to occur with CLD to the contested nature of the illness. We found no other research to either confirm or reject the possibility that this also occurs in other (chronic) conditions.In summary, we find that CLD patients experience significant symptoms, for which they only rarely find adequate relief from regular medical practitioners. They explicitly and implicitly seek validation of their symptoms by healthcare providers, peers and other CLD patients. We put forward the hypothesis that CLD patients may benefit from a specific approach, including appropriate (diagnostic) interventions early in the course of the illness, as these may yield long-term benefits. Finally, it is important that medical professionals are aware of their own attitudes and behaviours towards CLD and the potential effect on the patient, so that any unhelpful approaches to this medical problem – irrespective of its precise aetiology – are avoided. This advice is quite universal to all of medicine, and will not be news to most practitioners. Yet, our findings do underscore the urgency for this approach specifically with respect to an illness as complicated as CLD. While our findings relate to CLD, we identified many similar themes in research on other diseases or contested illness. Our research therefore also provides potentially important lessons for healthcare providers who see patients with such illness, including –most prominently at this time– patients suffering from persistent complains after COVID-19.Additional file 1. Knowing the Entire Story (chronic Lyme) – BMC Primary Care – Appendix. Appendix 1. Topic List. Appendix 2. Additional Quotations. References.


Some reluctance was expressed toward mass dog vaccination because it is seen as an interference in how the goddess controls dogs, by enraging them—hence infecting them with rabies—and sending them to bite wrongdoers. Addressing these cultural perceptions is likely to be critical in achieving effective control of dog rabies in this region. The study highlights the value of multidisciplinary approaches in the control and elimination of rabies, as well as other zoonoses. This includes the importance of understanding different culturally- and religiously- mediated ways in which humans relate to animals; and looking for points of convergence and mutual understanding, upon which context-tailored, linguistically-accurate, locally acceptable, feasible and effective strategies can be designed.Deeply embedded in local social, cultural, and religious settings, traditional healing is part of dog bite and rabies management in many rabies endemic countries. Faith healing, which usually encompasses a more holistic approach to health including physical, mental and social dimensions, is rare in the context of rabies. In Gujarat, Western India, the Hindu goddess Hadkai Mata is worshiped by low-caste communities as the Mother of Rabies in the event of a dog bite to a person or their livestock. This belief might influence people's attitudes and behaviors toward rabies prevention but has never been investigated. Through 31 in-depth interviews with healers and staff of Hadkai Mata temples, this paper explores the system of knowledge around dog and human rabies that is built and shared in these places of worship and healing. Qualitative and quantitative data were analyzed looking for convergences and divergences with the recently launched National Action Plan for dog-mediated Rabies Elimination. Results suggest that while the etiology of human rabies as a social illness is usually explained as the goddess's wish to correct misbehaving people and restore positive interpersonal relations, there is some appreciation for the biological processes of infection that lead to rabies as a physical disease. Hadkai Mata is believed to cure rabies if her patients undergo the necessary process of moral growth. Although conventional post-exposure prophylaxis is not opposed  Rabies constitutes an important public health concern and causes an estimated 59,000 human deaths, with the highest burden falling on the rural poor of Asia and Africa . This viThe mere mention of hadakwa  induces terror in rural areas. They [villagers] will actively help the government in this noble endeavor” . In relation to rabies and dog bites, faith healing is usually considered part of traditional medicine, together with the more common, both in India and abroad, application of substances on the wound , 14. IndBy influencing individual and community dog keeping practices and concepts of animal welfare, religion also impacts mass dog vaccination, but this aspect of rabies control is rarely studied , even byHere we explore the role played by the Hindu goddess Hadkai Mata  in the understanding of and approach to dog and human rabies in Gujarat, the only Indian State where the goddess is venerated. To our knowledge, Hadkai Mata is, among the world's current religions, one of the very few rabies-related deities who inspire the performance of faith-healing practices. In the past, the figure of Lyssa in Greek mythology and the Christian saints Quiteria and Denis were associated with rabies, but not with a specific treatment. Saint Hubert was a notable exception. Until the early twentieth century, people in Europe hung metal nails known as the keys of Saint Hubert on the walls of their houses to protect themselves from rabies. In case of a bite, the key was heated and used to cauterize the wound, and a thread—supposedly from the saint's stole—was inserted in a little incision on the patient's forehead for 9 days, during which time dietary restrictions were followed .via communicative action  . Despitee action , of haviNo religious or devotional literature exists on Hadkai Mata, because this deity exists only in the oral tradition. Scholarly research is extremely limited , 29 and Of the 36 States and Union Territories of India, Gujarat ranks fifth by area  and ninth by population . Agricust by human development index  is far below the 8% recommended by the National Health Policy, and the privatization of the health sector is on the rise, with public health infrastructure being primarily affected . With reMerging information from Google Maps, YouTube videos of religious festivals, and village-by-village exploratory trips undertaken by DN (anthropologist) in September 2019, 139 places of worship were located. Before the COVID-19 pandemic interrupted fieldwork, DN visited 65 of these, selected by convenience and purposive sampling, starting from those in Anand and Ahmedabad districts and the most famous ones in the research area. After excluding little roadside shrines and unattended temples, the remaining 31 places of worship were included in the study  located In the 31 study sites, DN and her research assistant, RR , met for the first time and interviewed the bhuva  or, when this person was not reachable, the sevak (temple caretaker). The purpose of this research, including the production of scholarly articles, was explained. Participation was entirely voluntary and verbal consent was obtained. On 25 occasions, either one or both among the bhuva and the sevak as well as some co-villagers participated in the discussion. The interviews, lasting 20 to 70 mins, were conducted in Gujarati, in or outside the temple  and were audio-recorded with informed consent. A pre-defined semi-structured interview sheet consisting of 36 open-ended questions guided the conversation, but participants were encouraged to raise unaddressed issues. The first two interviews served as a pilot, but they were exploitable for analysis. All the participants we approached agreed to be interviewed.Pictures and videos of the temples, Hadkai Mata's sacred images, and ritual paraphernalia were taken, where allowed by temple staff. The research team were often asked to treat the image of the goddess with respect, for example by refraining from printing her pictures to avoid them being accidentally dropped or stepped over. Observation was performed during four healing sessions and the ceremony in which a new bhuva was elected. During and after each temple visit, DN took notes of her own observations, feelings, comments, and thoughts, as well as those of the research assistant and three drivers. The presence of the drivers, all men, proved crucial for facilitating the researchers' approach to those temples where  women are not allowed and starting the conversation in vernacular Gujarati.The interviews were verbally translated into English and transcribed by the research assistant, and checked for accuracy by another Gujarati native speaker. Intelligent transcription was chosen to retain substance and accuracy, while ignoring fillers and expressions of agreement . Interview transcriptions were then inductively open coded by DN in Nvivo 12, where a double and iterative approach was taken. First, in each transcription, the answer to each of the key questions was identified and coded and the process was repeated for all interviews. Then, all the transcriptions were considered in their entirety and transversal themes were created. Photos, pictures, and field notes were used to enrich the data and referred to for triangulation. All data were pseudo-anonymized for analysis following transcription.Quantitative data were analyzed in Excel 2019. In the case of multiple respondents and disagreement among them, the opinion of the highest-in-charge person was considered.Direct quotes, chosen for their representativeness and revealing quality, appear in italics. Data are presented in order of frequency.The age of the study participants ranged from 25 to 85. All the bhuva inherited their role, which is male-only, from their fathers or older brothers. One election ceremony, observed by DN, where a new bhuva was chosen based on his ability to fall into trance, is a rare event.All the interviewed bhuva claimed that they provide their service for free, as they usually have another job from which they generate their income, and which allows them to rush to the temple as needed. Elderly bhuva maintained that they are financially supported by their family. While personal donations are officially not accepted, offerings to the temple, both in the form of money  or food for the deity, are. In the case of healing, donations can be more substantial. The biggest Hadkai Mata temples included in this study are managed by a Trust, which has access to the offerings and decides how to use them. In the smaller temples, this issue was not addressed during the study.Most of the Hadkai Mata's bhuva and sevak who participated in this study belong to communities historically considered out- (39%) or low- (52%) caste (Scheduled Castes and Other Backward Castes). Almost the totality of the surveyed temples are located in the area of villages designated to these people. Only in a small proportion of the surveyed temples, the bhuva or sevak belonged to a mid (3%) or high (6%) caste. According to the interviewees, high-caste people are rarely involved in Hadkai Mata devotion. The research assistant, drivers, and other Hindu people met during fieldwork confirmed this.sin,” “karma,” “being at fault,” or “having done something wrong,” in general or against Hadkai Mata. General mistakes commonly include lying, dishonoring promises, stealing, being stingy, overindulging in alcohol, and disrespecting relatives. The misbehaviors against the goddess mentioned by participants included committing perjury by her name, insulting her or her image, or “taking her lightly and believing that she has no strength.” The latter misconduct is considered particularly dangerous, because “like parents who let go the mistakes of their children once, twice, and then slap them if they repeat it, she […] doesn't let go of many mistakes,” “she doesn't tolerate anything wrong,” and “she doesn't forget and doesn't forgive.” The most distinctive feature of Hadkai Mata is her strict and resolute nature, to the extent that she is commonly referred to as “judge,” “magistrate,” “Supreme Court,” and “Nyaya ni Devi” . She is famous for being the most severe among the deities that “when other goddesses have complaints against their [unruly] followers, they register a case with her […] as we do at the police station,” and they ask her to “teach them a lesson.”When asked the reason for dog bites, 84% of the informants provided an Hadkai Mata-related answer, while the remainder mentioned ethological or biological reasons . According to an example often cited by those in the first group, there must be a reason why seven people walk together and a dog comes and bites only the one in the middle. This reason was explained as “good [not rabid] dog” to bark at the wrongdoer or nibble on their clothes. If they misunderstand or belittle this signal, she “sits on a dog” that, because of the presence of the angry goddess on them, immediately becomes rabid and bites them upon her command. As soon as the bite occurs, “Mataji's rabies starts” in the victim. According to one respondent, rabies could start in a person even if the biting dog is not rabid, or without any bite at all. “If she wants to make a case, her power is enough.”Like most Hindu deities, Hadkai Mata has a companion animal and animal that she rides, which, in this case, is a dog. In the Hadkai Mata-related explanation of rabies, dog bites are the means through which the deity punishes misbehaving people, by infecting them with rabies. She usually gives people a first warning, by sending a “Mataji's rabies starts,” there are two possible scenarios. People who do not take the goddess seriously or do not care about correcting their mistakes will invariably die. An informant reported of a man that belittled the bite he had received from a pup reckoning that the dog was just playing and not biting upon Hadkai Mata's command. In cases of exceptional devotion, the bitten person may even accept death as the only fair consequence of their misbehavior. This was reported to have been the choice of one bhuva who had operated in one of the surveyed temples until a few years ago. The mistake he ascribed his rabies infection to was kicking a dog, which had eaten his food, while he was on duty at the temple. According to his successor, he refused both the goddess' and doctors' help, asked to be locked up in the temple, developed rabies, and died.Once “Hadkai Mata turns a bad [rabid] bite into a normal bite” and “takes rabies back.”The second scenario applies to those who acknowledge their misdeed and want to fix it. If they follow the necessary healing process, described below, “The healing process as reported by the study participants consists of three consecutive, equally necessary steps.badha , or tying a thread around the wrist or neck of the patient, while the latter makes their promise to the goddess. The informants speculated that in most cases, the promise involves a future offer to Hadkai Mata in exchange for her doing the requested “work” for the follower. Provided that “the promise is made with your full heart,” then “everything [the person's chances of healing] is in the thread,” which purpose is to “build faith” and maintain it during Step 2. The wound is treated very rarely, because “Mataji is the medicine and she is the doctor,” so “people apply faith and go.”Step 1 usually involves the visit to an Hadkai Mata temple, where at least one of the activities illustrated in In one-third (n=11) of the temples, the bhuva runs a test to understand the presented bite case and how to handle it. Ten bhuva use wheat grains and one uses water, which is splashed on the patient's face to check their reaction. A bunch of wheat grains is thrown on a flat surface several times and, depending on the sequence of even and odd results, the answer to the bhuva's query is understood. There are usually three kinds of queries.good dogs” have a “sweet bite” that is usually not a concern, while “bad dogs” have a “bitter bite” for which the healing process must begin immediately in the hope that “Hadkai Mata will make it sweet.” “Good dogs” are usually pet dogs or dogs whose bite was provoked, for example when a person inadvertently steps on their tail. “Bad dogs” are those who show the signs of rabies  or unknown dogs that “act upon Mataji's order,” so they appear only to bite the designated person and then run away.The first one concerns the status of the dog and the dangerousness of its bite: “The second query regards the mistake that led to the dog bite. Most bhuva leave the patients to determine their misbehavior on their own, but in a few temples, a more public acknowledgment is considered crucial for the recovery process to help the victim be fully aware of their fault.it is spoilt” .The third query is about the chances of success of the healing treatment. When the victim shows evident signs of rabies, the bhuva will tell, by reading wheat grains as described above, whether the case can still be solved by Hadkai Mata or if “In most cases, the thread is tied by the healer, but in some circumstances, this can also be done at home by the bite victim themselves, if a relative of them goes to the temple and collects the thread. These circumstances include (1) people who live too far from the temple; (2) people who are too worried to wait until going to the temple; (3) women who are menstruating ; (4) people who belong to a caste lower than the one that runs the temple (where caste segregation rules are applied); and (5) people whose faith is particularly strong. When the healing process begins at the temple, Tuesdays or Sundays are the best days for two reasons. First, these are the most auspicious days to receive help from Hadkai Mata. Second, while the biggest temples are usually open 7 days a week, minor ones are attended by the bhuva only on these 2 days.Even if they [bite victims] come half an hour […] before this time, then she can save them. After that, Mataji says that ‘My time is over, now I cannot do anything. Nor can any doctor do anything’.”All the informants agreed on the importance of starting the healing process as soon as possible and within 3.5 days in all cases. “she will wait for 2 years and she will show the symptoms. Like if I owe you some money, I will forget, but will you forget?” Similarly, Hadkai Mata never forgets.According to most study participants, 3.5 days is also the time it takes for rabies clinical signs to show. A few mentioned a period of 1, 3.5, or 6 months for rabies signs to become evident, but a bhuva observed that “cannot give any guarantee” of success. High diabetes was often taken as an example to explain the difficulty of avoiding death when “rabies is full,” and 42% of the informants claimed that there is no chance of survival if the person starts the healing process after the 3.5-day limit. Death is expected to occur within—again−3.5 days since the onset of symptoms, or, if rabid patients are splashed with water or exposed to bright light, right away.If a person reaches the temple later than 3.5 days since the bite, the healing process can still begin, if Hadkai Mata expresses her approval through the wheat grains, but the bhuva “are like simple lawyers, where people can only make their promises,” “is like a court,” where final decisions are made. “People with full rabies” were described as being tied up because of their agitation, salivating abnormally, scared to drink, bathe, and look at a light, fire, or red objects, restless when air is blown on their face, and unable to stand still.Seven informants reported cases of people that developed rabies symptoms earlier than expected, were rushed to an Hadkai Mata temple within 3.5 days, and were cured as soon as the bhuva asked the goddess for an emergency healing and performed their rituals . Critical cases are often sent to the temple in Kotha that, unlike minor temples that “This section, and any other mention of the role of the bhuva, presents the position of the healers from their own perspective. Their patients may provide a very different portrayal of the bhuva.Bites from dogs—and dogs only—to people or their livestock are the main reason why people go to Hadkai Mata temples and benefit, if they wish to, from the services of the bhuva. A wide range of other deities are locally available for other needs. However, as with other powerful goddesses, people occasionally address Hadkai Mata also for generic reasons, which do not require the bhuva's assistance, such as having a  child, finding a good job, or solving visa-related issues. On Sundays, some major Hadkai Mata temples, such as the one in Patan, often become the informal venue for the members of a specific community, the Devipujaks, who consider Hadkai Mata their tutelary goddess. This is an occasion to spend the day together, celebrate the deity, and discuss, among themselves and with the bhuva, mundane issues such as disputes over money borrowing or extramarital affairs.Cure everyone, they are all your children. If they have done some sin, slap them and give them some small diseases, but don't give them rabies’.”In almost all the interviews, the informants specified that the main role of the bhuva is being available as middle-persons that can easily communicate with Hadkai Mata. All but one of the interviewed bhuva strategically claimed that they never present themselves as those who have the power to cure, because that can be done only by the goddess. While this denial of personal responsibility emerged clearly in the interviews, what bhuva say they are happy to do is telling Hadkai Mata something like “‘I tell them ‘You tell Mataji yourself, this is not my work’. This is the era of science ; we should not fall into this [today's bhuva should not put themselves in a position that makes them vulnerable to criticism by educated people].” Promises too must be addressed to the goddess, not the bhuva. “We are only taught that by worshiping her, rabies can be cured. We don't know what the secret behind it is. We have faith in the goddess. We follow moral values, rituals, and tradition,” a bhuva clarified.Similarly, they always stressed that the matter is resolved between the goddess and the patient, not the bhuva. Bite victims are encouraged to discuss their situation directly with Hadkai Mata, as a sevak explained: “From the moment the promise to the goddess is made, patients must abide by precise rules that, according to most informants, are often already known by the patients themselves .Almost all the study participants agreed that these rules apply for 5 weeks. One respondent claimed that 8 days are enough, while two said it depends on the personal agreement between the patient and Hadkai Mata .rabies attack” is likely to happen. According to one bhuva, this fatal event happens even if the person is undergoing PEP but infringes a rule. In particularly stubborn cases, the goddess may have a rabid dog bite not the offender themselves, but a dear family member or their livestock. Even worse, “Mataji will have such a full power that rabies can be spread from person to person via touching.” In case of minor offenses, patients “have to face the anguish of Mataji” in any case but, upon the payment of a fine to Hadkai Mata , no negative consequence will occur. To minimize risk, an informant pleads with people to temporarily free themselves from the promise by untying the thread during the break they need to take. Another said that sometimes bite victims, especially men who travel a lot for their work and cannot always be sure about the food they are offered, have their wives keep the promise on their behalf and follow the rules that this implies.Diverging opinions were given with regards to what happens if these rules are broken. Going to funerals or to houses where a child was born, drinking alcohol, or eating meat is particularly risky and an immediate, probably lethal, “insect-like things,” it means that “they are still at fault as per Mataji,” so “she is still in them.” In this case, the person has to consult any healer in their village to understand the precise mistake the deity is punishing them for and adjust the healing process accordingly.At the end of the 5 weeks, bite victims must go back to the temple to make an offering to Hadkai Mata. Sweets are the most common thanksgiving presents, together with dog-shaped toys or metal statuettes. According to four informants, patients should also do things like throwing away the clothes they wore the day they were bitten, lighting a lamp, drinking oil, or undergoing a water test. Clean water is poured into a vessel and shown to the bite victim: if they see “If a person forgets to go back to the temple, ignoring the dogs that they see in their dreams, where they are sent to by Hadkai Mata as a reminder, they will get punished by being re-infected with rabies, through a second dog bite or simply upon the will of the goddess. No matter what the patient does, this time they will invariably die because the goddess feels she has been cheated.always deals with people in accordance to their behavior.” Patients are considered cured or out of danger when they do not develop any rabies symptoms within 3.5 days since the bite, when their symptoms disappear, or, according to one informant, when they excrete in their feces white tiny jiv . In rare cases, the bhuva may suspect that “the case is still pending” and recommend that the rules for Step 2 be extended for some months. This precaution is taken especially when Hadkai Mata is punishing the wrongdoer on behalf of another, unsatisfied goddess, who may work on a different schedule.If people act appropriately during the entire healing process, this typically ends successfully because Hadkai Mata “their mind is not satisfied”; (2) “they think that this is all superstition”; (3) “they have already sinned a lot”; and (4) they are too late in seeking her help.All the informants stated that Hadkai Mata is always able to “take rabies back” from a person, if she chooses to do so. Nevertheless, fatalities occasionally happen, when (1) people do not have complete faith in her, so “the doctor and Mataji are enemies.” Another said that hospitals and doctors cannot be mentioned in the goddess' presence. “For fever and other natural diseases, we have to go to the doctor,” a sevak explained, “but that is a different thing.” When the person starts PEP, “she won't take any responsibility” and she can deny help. Several informants justified their opinion by observing that doctors also go to the temple in case of a dog bite, and that hospitals often refer their rabies cases to them. They also stressed that, as PEP is free in government hospitals, people must prefer temples over hospitals not because of money issues, but because of their faith.The question as to whether PEP should or should not be administered divided respondents. Eight were against this option and tell their patients that there is no need for vaccination, because Hadkai Mata has enough power to cure rabies. According to one study participant, if people go to the hospital, rabies symptoms immediately start because “via wheat reading by the bhuva, and obtains permission from Hadkai Mata. The general opinion is that “if they first climb the steps of the hospital, then nothing will work here [at the temple],” both because Hadkai Mata would be annoyed and because people would have wasted precious time. Should patients take PEP despite the goddess' negative answer, “their case will be spoilt for sure.” That said, the underlying idea that “Why do we need vaccination when we have Mataji sitting here for us?” is found in this group too, and is legitimized by the fact that “here it never happened that someone came and didn't get cured.” The second circumstance in which PEP can be taken is when symptoms are so severe that Hadkai Mata could struggle to cure the patient.Eight of the respondents reported believing that PEP can be taken, but only in two situations. The first is that the person goes to the temple first and asks, Seven study participants had a neutral opinion and prefer not to discuss PEP with their patients. Some said that they cannot explicitly recommend PEP, but they are fine if their patients take it—especially the doubtful ones and those who belong to communities that are not particularly devout to Hadkai Mata. This also reflects the fact that they do not want to be blamed in the future for advising them against vaccination. That said, most of these informants personally believe that Hadkai Mata's help is sufficient.Mataji says that if you have any doubt, then you take vaccination,” according to these informants “95% of people don't need vaccination because they have faith in Mataji.”Eight informants considered PEP necessary and claimed that they usually recommend taking it, specifically within 24 h. Even if “Three informants spontaneously mentioned the number of injections that, to their knowledge, are administered for PEP; 5, 14, and 20 injections.no one would go that far for a street dog,” by trying to catch them and committing to a 5-week obligation on their behalf. Hence, rabid dogs invariably die—again—after 3.5 days from the moment they were ridden by the goddess and became rabid, or as soon as somebody throws water on them. Pet dogs could potentially be cured, but it is very unlikely for them to become rabid, because Hadkai Mata only selects dogs that can move freely and walk long distances—“even 100 km”—to bite the targeted person. Only two respondents said that rabid dogs can be cured, either by giving them buttermilk to drink or when they spontaneously perform pradakshina .“Bad,” rabid dogs are always described as free-roaming and mostly unowned. Unlike people and livestock, Hadkai Mata cannot cure them because “Diverging approaches to rabid dogs were found. Half of the respondents said that dogs are killed, both to keep people safe and to avoid, especially during the wedding and festival seasons, that bite victims are bound to Step 2-rules and cannot enjoy social events. The common belief that Hadkai Mata would not cure her dogs anyway, because of the lack of a human intermediary, was often provided as a justification for dog killing. In two temples, food is offered to Hadkai Mata as a self-imposed community fine when a dog is killed.to shut their doors and […] wait for the dog to pray at the temple [when they finish the job of biting people assigned to them by Hadkai Mata]” and leave the village for good. In one village, food is offered to the animal as a ritual before their departure.The other half of the interviewees claimed that rabid dogs cannot be killed, because the goddess is sitting on them and she cannot either be hurt or disrespected by killing her companion animals. A bhuva tells his co-villagers “it is always good to stay away,” because of the power of the goddess. One bhuva made his position clear by saying that “rabies is not a disease, it's the wish of Mataji,” so he would not support anything that goes against her will.All the 11 informants with whom mass dog vaccination was discussed hypothetically said they dislike this measure. The objection is that dog bites are useful to and wished by Hadkai Mata and the other goddesses that request her assistance to discipline their followers. Mass dog vaccination is considered a risky interference in Hadkai Mata's work, from which “For many diseases, endemic countries have developed specific policies, often supported by the WHO Traditional Medicine Strategy , to streIn the context of devotion to Hadkai Mata, many key points of divergence—but also some of convergence—with the technical solutions of the NAPRE can be observed and, hopefully, discussed and worked upon. The participants in this study, including those who do not believe in vaccination, never expressed feelings of hostility or resentment toward biomedicine or doctors . However, this could be due to the lack of confidence in expressing this view to an unfamiliar research team. Nevertheless, they were proud of having—according to them—doctors among their patients, and cases referred from hospitals. Incidentally, the first time DN heard about Hadkai Mata was in a newspaper article that mentioned the presence of the goddess' portrait in a rabies clinic in Ahmedabad. Additionally, at least in minor temples, bhuva are not materially compensated for their service  and this presumably reduces the risk of non-cooperation because these people's source of income lies elsewhere. That said, the fact that one quarter of the interviewed bhuva are opposed to PEP, and only another quarter explicitly recommend it, is worrisome and calls for dialogue and engagement with local faith healers. The success of this dialogue depends on the external interlocutors keeping in mind that Hadkai Mata controls not only rabies but, through it, social ill-being. Looking back at the extended parallel processing model presented at the beginning of this paper , in this context, the factor of fear is anything but straightforward. Anti-social behaviors are feared as much as, if not more than, rabid bites, so these two issues need to be discussed and addressed as a unit.outside the victim and their responsibility . Nevertts, poor—. Rabies Hadkai Mata is for 3.5 days” is central. The 3.5-day limit for seeking treatment leads to two observations. First, the belief that healthcare should be sought first and foremost at the temple, preferably on Tuesdays or Sundays, dangerously delays PEP (for those who choose it). In India and abroad, traditional medicine has already been found to delay vaccination ; collect their views on dog keeping and dog vaccination; and—above all—understand the structural challenges they face as socially and economically marginalized people in accessing livelihood assets and, when exposed to rabies, healthcare . This coThis study approached the system of knowledge of rabies collectively built by faith healers around the goddess Hadkai Mata in rural central Gujarat through the concept of “healthworld,” an important analytical tool for the field of health in its social context and a perspective toward decolonizing research and public health agendas . In the The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.Ethical approval was obtained from the University of Washington (STUDY00006267)—with reliance approved by the University of Glasgow—the Ashoka Trust for Research in Ecology and the Environment (IRB/CBC/0005/ATV/07/2019), and the Indian Health Ministry's Screening Committee (2019/7418). Written informed consent for participation was not required for this study in accordance with the national legislation and the institutional requirements.SC, KH, DN, and TL: conceptualization and funding acquisition. DN: data curation, visualization, writing , and methodology. DN and RR: investigation. SC, KH, TL, DN, and ATV: project administration. SC, KH, and TL: supervision. SC, KH, TL, RR, and ATV: writing (review & editing). All authors read and approved the final manuscript.This work received funding from the European Union's Horizon 2020 research and innovation program under a Marie Skłodowska-Curie Grant (751267) to DN, a Wellcome Grant (207569/Z/17/Z) to KH, and a DBT/Wellcome Trust India Alliance Grant (IA/CPHI/15/1/502028) to AV.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The reviewer KT declared a shared consortium with one of the authors SC.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. 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