First stage: Patients

We employed the rigid quantitative version of the method of semi-formalized interview, which is a combination of open-ended and closed questions. Data from the quantitative survey were processed using SPSS. The sample included 600 chronic patients chosen by quotas according to the following criteria: type of disease, gender, age. In order to establish the quotas by disease type, statistical reports on disease incidence among Samara citizens in the year of 2011 were utilized.³³ The respondents underwent treatment in various departments of Samara state hospitals and clinics (gastroenterology, urology, oncology, pulmonology, dermatology, otolaryngology, ophthalmology, cardiology etc.). In addition, 43.2% of respondents were male and 56.8% were female and ages ranged from 15 to 70, with most respondents over the age of 40.

Second stage: Doctors

The professional group of doctors was surveyed applying the two qualitative methods: in-depth and focus group interviews. The purpose of the latter (which followed the in-depth interview) was to clarify the doctors’ views with the help of discussion, to find out the pros and cons of the involvement of patient narratives in medical practices. In-depth interviews were carried out with 35 doctors working in Samara state hospitals and clinics, selected using the purposeful sample method using the following criteria: area of professional activity (cardiology, ophthalmology, therapy, gastroenterology, oncology, endocrinology, pulmonology), period of time working with chronic patients (at least one year) and age. As a result, 7 doctors under the age of 35 years, 17 doctors between 35-50 years of age and 11 practitioners over 50 years of age took part in the survey.

The in-depth interview guide with doctors contained more than twenty questions. The interviews were carried out face-to-face in a friendly atmosphere at the informants’ workplaces (the city’s medical institutions which included staffrooms, in-patient hospital training rooms).

Twelve other informants participated in the focus group interview. The participants of the focus group interview were selected by means of the same criteria as in the in-depth interview, except that for the age criterion, the informants’ age was limited to the range of 35-50 years. The age range limitation on the one hand provided the homogeneity required methodologically for the focus group interview and, on the other hand, focused on middle-aged doctors as the most numerous group among practitioners in general. The focus group interview was held on a single occasion involving all twelve participants. It took place in a properly equipped classroom of Samara National Research University and lasted for 1 hour and 10 minutes. The interview was filmed and later transcribed. The in-depth and focus group interview transcript processing did not involve the use of special software programs.

Third stage: Medical Students

Medical students acting as research subjects took classes at Samara State Medical University, which is one of the largest medical universities in the country and is included in the International Association of Medical Schools in Europe. The structure of the University consists of 11 faculties, 80 university chairs, 51 hospital departments, and seven research institutions. Every year more than 8,000 students study at the University.

Research on the students of Samara State Medical University was carried by means of the in-depth interview method with a total of 30 participants. This type of interview allows a wider scope of information to be obtained, both explicit (the direct answer to the interviewer’s question) and non-explicit. The purposeful sample method was applied with the following criteria: faculty and year of study. The study participants were made up of students from the General Medicine faculty and internship of the medical university. The therapeutic faculty is the largest of the university, with the greatest number of students (more than 2,000). It is in this faculty that doctors are prepared for what they will deal with in their future professional activities with chronic patients - the object of medical care in narrative medical practices. We interviewed fifth- and sixth-year students as well as interns, who are considered to be nearly graduate specialists, “almost doctors.” The interview guide contained eighteen questions. The interviews were held face-to-face in the rooms of the residence hall where medical students and interns live as well as in the classrooms of the medical university clinics where they were having their practical training.

All the ethical standards relating to the first three stages of the analysis were respected: all the informants were aware of the research objective, the interviewers obtained the informed consent regarding participation in the research and the publishing of research deliverables in scientific sources after audio and video (in case of focus groups) recordings were transcribed and made anonymous. The approval from a research ethics committee of Samara National Research University, named after S.Korolev was received.

Fourth stage: Online doctor-patient discourse and practices

We analyzed online medical communities (websites) characterized by wide geographical coverage, shared interests of participants of these communities and the discussion of real life patients’ medical problems in the offline world. The online communities functioning on the basis of the Internet sites (forums) in the Russian language were shortlisted for the purposeful sample method analysis. The main criteria for this selection were: a thematic focus on some serious chronic disease; a great number of site visitors (over 7,000 visitors); site developers belonging to a patient group (in order to avoid sites with probable marketing orientation); site updating on a daily basis; and interaction among site users. In accordance with the specified criteria the following sites (forums) were selected: Hepatitis forum³⁴; Forum of life: Forum for sick people to communicate³⁵; Forum for people living with HIV/AIDS³⁶; Forum for HIV+ people.³⁷

To obtain sociological data we employed an observational method adapted to analyze localized online communities³⁸ as the most adequate for their empirical study. The online observational method presupposes a certain typology of researcher’s roles differing in the extent of their involvement in the community under study. For the purposes of the present research we took on the role of unregistered user.³⁹ This research situation does not require informed consent. The findings, however, will be presented in an anonymous way.

Stage one: point of view of chronic patients

Our study of chronically ill patients of the city of Samara sought to describe quantitatively the practices of producing narratives as well the motives behind each scenario. The analysis showed that the dominant practices are those of “not telling,” of “unborn narratives”: only 29.0% of the interviewees tell their illness stories to their doctors often, but the majority (71.0%) hardly ever does so. Approximately one third of the interviewees (26.8%) only sometimes tell their illness stories. The study showed that such practices of not expressing the subjective meanings of illness on the part of patients are not significantly associated with patient’s education, gender, or marital status. The only distinctive factors were age and financial status, which are interdependent to certain extent (with a level of statistical significance of p ≤ 0.05). According to research data this “conspiracy of silence” is more characteristic of young and middle-aged people (under 50 years of age): in these groups the number of people who never tell doctors about their lives with illness is 1.7-2 times greater than in the groups of older people. People with high incomes produce narratives less often: the number of “silent” patients among them is 1.5 times greater than among people with low incomes. According to the research data, the most typical motive of such behavior is the not having the habit of telling the doctor about feelings and experiences of living with illness.

The patients’ silence about “that which is most important” as a habitual practice in the framework of clinical interactions is the consequence of a tacit convention of domestic biomedicine: “The doctor doesn’t ask, the patient doesn’t tell.” Additionally, it is a practice generated by patients’ views about doctors which have been formed on the basis of negative personal experience in interactions with them. Such views include: seeing doctors as medical technologists who do not need to know about patients’ emotional experiences (79.9% of interviewees); believing that doctors are motivated only by money in their work (51.4%); feeling that doctors have so much work that they have no time to listen to patients (49.9%); perceiving that doctors have mostly a formal attitude toward their work (25.7%). Also, the interviewed patients have motives which reflect their own fears and anxieties, their own experiences of living with illness that make them consider the discussion of illness as demonstration of weakness (9.4%). There is also the fear of being misunderstood (8.1%) and the desire to maintain control over the illness (4.6%).

Stage two: point of view of doctors

The qualitative study of practicing doctors sought to describe the doctors’ attitudes towards the use of patients’ narratives in the treatment process and to describe the practices of producing (or not producing) patient’s narratives (from the point of view of doctors).

Firstly, the analysis of the transcripts of the in-depth and focus group interview showed that doctors’ attitudes toward the use of patients’ narratives present a rather miscellaneous picture. Extremely negative doctors’ attitudes toward narrative practices are connected with the fact that doctors consider narratives to be useless conversations that have nothing to do with “real medicine”: “What’s the use of it? I don’t let them talk much” (focus group, male, 36 years old, 8 years of experience); “As a doctor I direct my actions toward immediate therapy, abstract questions hardly help the cure, they are useless” (female, 39 years old, 15 years of experience). Within the framework of such an approach, narrative medicine is considered, at best, a “treatment by words” ascribed to psychologists and psychotherapists: “special medical staff should do it, 70% of doctors don’t need this information, it’s superfluous” (female, 53 years old, 30 years of experience).

At the same time there is also a positive attitude towards the process of patients’ telling about their suffering. Patients’ stories are viewed as an effective way to establish contact with a patient either during the reception by the doctor or during long medical procedures. In this approach we can say that listening to a patient’s story by a doctor or a nurse is a performative form of a communicative acknowledgement of the patient which positively influences the establishment of confidential relations between the patient and the medical staff.

However, the most common attitude among participants is a transitional attitude towards the patients’ narrative, by which doctors listen to a patient as part of “common courtesy” but do not encourage or use the narrative in clinical interactions: “It’s deadly boring! Just imagine, I hear the same talk every day. Putting it mildly, it brings you down” (male, 44 years old, 18 years of experience).

According to doctors’ opinions, two-thirds of all chronic patients are patients who do not tell stories. Doctors identify those who tell stories about their problems in life connected with illness as those who are aging. Accordingly, “they are people older than 60 or 70, especially people over 80, interested mostly not in medicine but in how to live longer, what is going on in their families, how to exist” (female, 45 years old, 20 years of experience). According to doctors’ opinions, the causes producing such narratives are a lack of people to communicate with, loneliness, and social alienation, whether real or imaginary: “They are socially unprotected people, lonely and abandoned by their children” (female, 50 years old, 18 years of experience).

These doctors’ narratives speak to the modern social situation in which elderly patients in desperate loneliness produce patients’ narratives in the hope to be heard. However, the implication of doctors talking about patients’ narratives as the product only of social alienation is that such narratives are dismissed by them as needless and superfluous, “idle talk.”

On the whole, the Samara doctors interviewed see practically no possibility of using narrative medicine in Russia. They connect this fact with endless bureaucratic reorganizations of Russian medicine, with the low status of doctors in Russian society, and with the lack of work motivation in this professional group which is “rather inclined to avoid patients” (focus group, male, 45 years old, 16 years of experience).

Stage three: medical students’ knowledge of narrative medicine

The qualitative sociological study of students of Samara State Medical University was aimed at identifying the students’ knowledge/ignorance of the basic ideas of narrative medicine as well as describing the methods of forming narrative competence involved in the learning process (if any).

The analysis of transcripts of in-depth interviews with the students has shown none of the polled informants have heard anything about narrative medicine or are acquainted with its basic ideas, nor have they understood the therapeutic importance of patients’ stories about their illnesses during doctor-patient communications. In Samara State Medical University there are a variety of academic subjects oriented towards doctor preparation (the surveyed students called them “optional”) whose goal is somehow to describe the doctor-patient interaction. These are: Bioethics, Medical Ethics, Pedagogy and Psychology, Social Work, and Medical Psychology. One of the surveyed students worded his comment regarding these subjetcs in this way: “they kind of teach you how to speak with patients” (A., male sixth year student). The basic content of these subjects is the description of normative deontological principles, the legal side of doctor-patient relations:

So, they told us in the medical ethics class that the doctor is always wrong, that there are structures which protect patients, but there aren’t any state structures or private structures which protect doctors. That is, if a doctor makes a mistake they are very likely to be considered guilty. We were therefore told that we should keep good and detailed medical records because a doctor writes the record not for themself but for a public prosecutor. (K., male, sixth year student)

The study showed that the curriculum of the specialty did not pay any noticeable attention to using patient narratives about illness. All informants responded similarly:

Whether they focused on this. . . no, they didn’t. They may have paused to mention it somewhere. Something was said briefly between topics. But to devote the whole lesson or a whole course to communication with patients - no, there was no such thing. (I., male, fifth year student)

The analysis of interview transcripts also showed that students are practically not taught the art and technique of placing focused attention on the patient, hearing the patient’s call and answering that call (this “focused attention” is an element of doctor’s narrative competence, according to Charon). Students do not write special reflective diaries (one of technologies which Charon suggests for developing focused attention), where they would express their impressions after communicating with a patient using common (not medical) language and at the same time delving deep into the personal story of the patient related to the disease, learning to see the medical case not only as an objective pathology (disease), but also as the patient experience (illness). Students of Samara Medical University write diaries of completely different type, in which they note only the physiological background of the disease and clinically observable symptoms in full compliance with the biomedical discourse:

Basically we kept a diary, if the diary refers to the patient’s condition and its dynamics: how the patient feels, whether they have pain, whether something appeared, disappeared, changed, or was added. If you mean a personal diary in which I record my impressions of the medical practice every day, then no, of course we have no such thing. (I., male, sixth year student)

It’s called the disease history. You go to the patient, greet them and ask, “What is your complaint at the present moment?” We are not encouraged to write such diaries. . . . There are certain standards and we have to meet them. (N., female, fifth year student)

Moreover, the very idea of writing a reflective diary in which a doctor would write their impressions after communicating with a patient, to further the understanding of the meaning the illness has to the patient seems inappropriate to medical students: “It sounds very funny to me. . . . It is absurd” (A., female, sixth year student).

Analysis of interview transcripts showed that there are no trainings which teach doctors and give them skills to develop such reflexive writing: “They absolutely never taught it, we didn’t have such diaries, we didn’t have any such training even in psychology classes” (O., female, fifth year student).

However, most students’ images of a good doctor include such components as humanity, sympathy for the patient, compassion, though not always as the first characteristics:

For me, the doctor is a person who makes every effort for people. He or she should love people and be devoted to the profession no matter what. Because the primary concern of the physician is to relieve suffering and to save sick people. (M., female, sixth year student)

A good doctor means empathy, ability to sympathize, because sick people. . . . they suffer. (E., female, intern)

In addition to this, according to the opinions of informants, medical students get their understanding of the specific character of doctor-patient relationships not from special courses but as the result of communicating with practicing doctors, heads of their practices, clinicians: “This knowledge can be taught only from doctor to doctor, only a doctor can tell how to make use of this knowledge in a better way” (S., male, sixth year student). It is clear that in this case they are talking not about narrative medicine but about establishing trusting relationships between doctors and patients, which are necessary for the therapeutic interaction.

Overall, the study showed that today students of the General Medicine faculty of Samara Medical University have no understanding of the therapeutic and ethical significance of including the patients’ narratives in the care process. The disease as the patient’s experience, not just as a medical diagnosis, has no importance for them. They interpret doctor-patient relations either in the conventional biomedical paradigm with its inherent clinical discourse (recording a typified medical history of disease), or in the traditional regulatory framework of medical ethics. Students understand medicine primarily as the scope of medical technology. At the same time, however, from their lectures they are aware of the ethical requirements of the doctor and about the need for empathy and sympathy for the patient, and they also receive practical lessons from medical practitioners regarding how to communicate with patients.

Stage four: online doctor-patient communications

The qualitative study of online doctor-patient communications was focused on the description of the objective content of these communications. Analysis showed that they are characterized by a greater focus on obtaining professional help in a situation of illness. Almost all online patient messages addressed to doctors contain exclusively medical information such as lab results, medication, and information about interactions with medical institutions. If these are narratives they represent exclusively clinical stories:

Good day! I am female, 27 years old, my weight is 53-55 kg and my height is 158 cm. I got the results of a periodic health examination and am attaching them to the message. I took the test on an empty stomach. Indicators: glucose 6.0 (normal range is 3.5-5.5), cholesterol 5.6 (normal range is 3.2-5,8). Should I see an endocrinologist or take another test at another lab? Tell me, please, esteemed doctors.³⁵

The field of the content of such communicative practices can be presented by the following classification:

1. Requests for advice in concrete illness situations:

Seeking advice referring to a professor who uses general electromagnetic hyperthermia combined with chemotherapy for treatment of oncological diseases.³⁶

Hello, please tell me, can I get vaccinated against hepatitis B if I have already hepatitis C??? Now I’m going through therapy with generic sof [sofosbuvir] and dac [daclatasvir]. Should I complete the therapy first and then get vaccinated? What would you recommend?³⁴

2. Discussion centered around concrete medicines and treatment methods:

What far-out treatment methods can you recommend?³⁴

Dear doctors, I’d like to know you opinion about electronic cigarettes. How harmful is “rectified” nicotine? Does it cause cancer?³⁵

3. Crosschecking diagnoses and medical test results:

Can I trust Fibroscan if my weight is 105 kilograms?³⁶

4. Asking for help to find good clinics and treatment methods:

I’d like to know which Moscow clinics offer free treatment to people living in other regions according to medical insurance policy.³⁵

5. Requesting information about long-run prospects of illness:

Can the hepatitis virus reappear after 5 years?³⁴

Though the online discourse is totally medical in patient-doctor communication, there are some nonmedical meanings of disease there, in particular, the meanings which are associated with the cost of treatment: “no extra money and I don’t want to make mistake”³⁵; “Can a medicine be cheaper in Russia than in India, where it is produced?”³⁴

There are also subjective complaints that are typical to ordinary offline primary consultations with a doctor. These complaints, these messages are not yet medical:

For as long as I can remember, I constantly sleep with my mouth open at night. During the day I breathe through my mouth. I fall asleep with my mouth open. But at night my nasal mucous gets dry, I get stuffy, I can’t breathe through my nose. . . . I have decided to deal with this problem; I would like to understand what direction to go. Please tell me, what causes should I explore?³⁵

The analysis of the patients’ narrative practices within such communications shows that those in which the patient goes beyond the medical question of specific diseases in fact get no response. In this case there is simply no doctor-patient communication. Such a purely pragmatic and clinical orientation to professional medical help is quite often required by the website. On such sites doctors and moderator explicitly request that patients ask only about specific diseases, using the language of symptoms and test results, in such a way that the appearance of nonmedical stories about illnesses is practically blocked. Unfortunately, virtual communication between a doctor and a patient entirely repeats offline interaction, the analysis of which was presented earlier. In this sense, the triangulation of results from the offline communications confirms conclusions concerning offline doctor-patient communication.

At the same time, the analysis produced additional results. People’s stories about their illnesses, about what it means to them, what social and existential problems it creates, how it influences the treatment, the relations with relatives, colleagues and doctors, were all present in another virtual communication platform: those dedicated to patient-patient exchange. One example is what Frank calls the “quest narrative,”³ connecting illness with existential transformations:

Five years ago when I learned that I had only two or three years left to live, I understood intuitively that I shouldn’t focus on this thought. . . . That is, I continued to live, I just started to appreciate every moment more. . . . In the difficult moments of life I’ve always invented a “little help” for myself. . . . What helped me to accept. . . the diminished life span which was left for me was the art of photography. In my early days I used to amuse myself with photography, then I abandoned it for 20 years. . . . When I learned of my diagnosis and stopped drinking. . . I turned to photography again. Here are my photographs.³⁴

The subjects of written narratives which are addressed to the patient community try to offer psychological help to “friends in need,” to share illness experiences and experiences of struggling with illnesses, or offer help in searching for concrete clinics, doctors, lawyers and drugs. These narrative communities of self-help are regarded by many as families:

This website represents something familiar for me, like family. Family - this is something near and dear, the most amazing and wonderful people. Years go by and we are always together.³⁷

Help is generally given as answers to messages representing the figure of the “wounded storyteller.”³ Such messages do not become a coherent story, they have no pragmatics, no reflection, no self-story; they are Frank’s “chaos narrative,”³ a written cry for help and undifferentiated expression of pain:

Just today I was given this diagnosis. I’m just in shock, I can’t stop crying and I don’t think I’ll be able to sleep all night tonight. I can’t stand the thought. How will I live from now on? I’m confused, everyone, help me!³⁵

However, in online patient-patient communication we also see the “work” of canonical biomedical narratives. The first of these, the “restitution narrative,” assumes the structure “Yesterday I was healthy, today I’m sick, tomorrow I’ll be healthy again.”³ As a classic medical “narrative of progress” it includes a history of diagnosis by doctors, the names of medications and diagnoses, and the sudden life changes after receiving the correct diagnosis. Even in such rubrics as “My story” and “Living with hepatitis C,” chronic patients talk about their suffering mostly using the medical language of tests and prescriptions, conceptualizing the disease as an objective pathology defined by biomedicine, without trying to give it any subjective meanings.