The main focus of this study was the manner in which the participants acted and interacted in describing how they handled their situations. The main concern of the patients was that they were overpowered by hopelessness. “Being overpowered by hopelessness” was also identified as the core category. This reflected how they handled their life situations with their symptoms of TB. This core category was interrelated with and influenced by the four causal and three context conditions, which led to the four consequences shown in the model. The second main concern, related only to the “well-being” segment of informants, was having good awareness of the disease. In our research, this group focused on the health system’s delays.
The opinions in the groups were very similar. Some differences between men and women were observed. Men more frequently reported patient delay while women more often reported health systems delay. The model we constructed  was named “The trajectory of TB diagnostic delay among patients in Arkhangelsk” (see Figure 1).
“Causal conditions” are a set of events that lead to tuberculosis diagnostic delay. Four categories (“fearing TB”, “lack of knowledge about TB disease”, “distrusting the health system” and “perceiving general powerlessness”) were generated (see Figure 1).
Tuberculosis is perceived as a stigmatizing disease. People try to deny the presence of the disease as long as possible but then responsibility to the society and the family is “switched on”. In contrast, stigma plays a minimal role in the family. Some relatives convinced the informants to go to a clinic to seek a diagnosis while some informants went to the clinic because they worried about members of their family. Stigmatization was more visible in the context of work, causing concern about working relationships and future possibility for work.
The following citations illustrate these findings:
It is a shameful disease. It is impossible to tell somebody about it. It is not the same as for cancer, for instance. You can talk about cancer, but not about tuberculosis. The husband of my sister had tuberculosis, we were afraid of associating with him…It is said that tuberculosis is incurable; it may be a hidden disease…It is a terminal illness…(Female FGD)
I had the possibility to get a post…. I could go by bus, but that is not a good thing to do, so I walked there. Before I was diagnosed with tuberculosis, I infected everybody around me in 20 days, it is scary! (Female FGD)
Family life was under pressure because of tuberculosis, but there were two different perceptions. The family supported most of the patients and even pushed them to the health system which was a positive factor for early diagnosis.
Everybody reassures me…Supports me! How could it be otherwise?! (Female FGD)
Very few informants related contradictory experiences.
A woman said that she would not be allowed to stay in her home after she is released from hospital, because she may infect her granddaughter. (Female FGD)
As for relations with friends and other acquaintances, the support depended on the situation and the level of closeness in the relations.
I think people will avoid me! The friends advised me to go to the clinic. They said, you will recover and will be as others. (Female FGD)
Fear of TB interrelated with lack of knowledge about symptoms of tuberculosis. Many informants stated that they were not aware of it as a severe disease when they became ill. Some said that tuberculosis should have ‘special’ symptoms, not those similar to symptoms of a cold.
The following citations illustrate the causal conditions:
It is very hard to discover the person who is the source of infection… You meet at least 100 persons per day… The disease is fatal. It is impossible to discover (the source). (Female FGD)
If I knew that it is tuberculosis I would run to the clinic immediately! (Male FGD)
I did not know that tuberculosis is such: these symptoms were simple; I have had similar ones many times before (Female FGD)
The participants related that people distrust the health system, perceiving it as ineffective because of experiences involving various errors by medical specialists. These errors were a part of the diagnostic process or affected the right diagnosis and treatment. Very often, doctors and medical assistants were described as incompetent. Informants stated that “good doctors” do not go to a village to work and only “alcoholics and incompetent specialists work in the districts”. If a doctor’s assistant was good (in the patients’ opinion), he/she would still be considered as not having enough knowledge because of a lower education than the doctors. This exacerbates the existing lack of facilities in the small health centres.
Several days I was treated for pneumonia, but unsuccessfully. (Male FGD)
They prescribed antibiotics for me…. I took them at home… Then I went to the hospital, they relieved the cough, but not the fever. After half a year I went to the hospital again…. After one month I was discharged…. I have been working and working… I wondered why I had been losing weight? The temperature was 39 degrees. My lymph nodes had become affected… fluorography did not show the disease in my case…. (Male FGD)
The doctor visited me but only prescribed medicines. They did not discover my problem… something wheezed … they gave tablets to me…. I went to the sauna… then I visited the clinic, they said…. Your lungs do not breathe… It was a rib fracture in my case… If you say to the doctors, that it is painful to breathe, they just say: “It is a cold, everything will be OK…” (Male FGD)
General powerlessness refers to the perception that there is no possibility to influence one’s own life or health, which causes a delegation of authority to somebody or something else. Very often, these patients complained about authorities at all levels. This is the position of an observer, not an actor in his/her own life. However, the difference from an observer position is that suffering is “included” as a part of such a life.
Half of the people in the village never make a health check-up. If you catch severe disease, you can do nothing! (Female FGD)
Half of the people in the village are made up of sick persons. Nobody checks themselves. I meet everybody. Some persons have not even enough money for food. (Female FGD)
If people were divided into two groups according to their belief in the possibility of changing their lives, TB patients would belong to the group with lower willpower to change. In this group as well, the willingness might be higher or lower, as some considered that they could change (create good relationships in their family, change workplaces, educate their children, etc.), but others did not. A perception of general powerlessness could also affect the individual’s own health. Some might consider improving their own health, others will not. In terms of health-seeking behaviour, this could range from self-treatment in case of illness to just waiting for relief in an emergency situation.
These attitudes of patients lead to passive behaviour that works against early diagnosis.
Contextual and intervening conditions
Contextual and intervening conditions create circumstances or problems through which groups of individuals respond by their action/interactions.
Three categories (“ineffective health system”, “widespread alcohol in the population” and widespread poverty in the population”) were identified as the context and intervening conditions influencing the phenomenon (see Figure 1).
The prolongation of the diagnostic period was related to the remoteness of health facilities. Many settlements are situated 50–100 km from any medical specialist in the Arkhangelsk region.
It is 80 km to a doctor…. If somebody cuts off a leg at work, he will surely die…(Male FGD)
These components of ineffectiveness of the health system in real life and in the informants’ perceptions create a complex context for care-seeking behaviour. Moreover, tuberculosis was seen as an obstacle to work and to personal and family relations. All informants described an influence of tuberculosis on important aspects of their life, work, family, and relations with friends. Typically, tuberculosis was an obstacle for work because of the diagnosis or the necessity to follow a very strict regime of taking pills in the anti-tuberculosis dispensary even during the outpatient period of treatment. Consequently, they described the necessity of being absent from work for half a day every day. This period is six months at a minimum, but may last much longer in some cases.
A man went to get a job, but there was a shadow in the lung – he had to go to hospital. Doctors held him for a long time (Male FGD)
I got to this place (anti-tuberculosis hospital). Now I have a note in my medical card. I need to have a check-up twice a year. The employer will say: “You are useless to me!” (Male FGD)
It is quite normal for some people to be stigmatized because of their lifestyle of alcohol abuse and the fact that their social setting might be characterized by alcohol abuse. Alcohol behaviour might be “active” or “passive”: some people live in very closed social settings, but some change company from time to time to have the possibility of drinking together with others. As a result, frequency of drinking changes depending on such conditions, varying from once a month to everyday drinking.
Alcohol abuse is a clear problem for Russian society, and its effect on health-seeking behaviour is very strong. Some persons do not seek care because they are oblivious under the influence of high doses of alcohol. Some of them have no homes, medical insurance, or families, and it is unlikely that such persons have a choice to drink or not.
Drinkers are different. You never know is he is ill or not… Always there is alcohol… All use one glass only…. (Male FGD)
Such alcohol consumption leads to a decreased social status and social motivation of a person and finally to stigmatization.
None of the patients could be described as well off. Moreover, patients have to pay for travel and for hotel accommodations in the central city of the region. The treatment is free-of-charge, but transport fees are high for many citizens, especially for the poor people who suffer from tuberculosis. The time required for the diagnostic process was a delaying factor for many informants because they were not able to stop earning money or maintaining their households. Many of them described how they completed work before going to the health system.
It is a problem with no solution - the level of life is very low. Pensioners and old people are ill they have small pensions. Everything becomes more and more expensive…(Female FGD)
People become weaker when it is impossible to find a piece of bread…(Female FGD)
Our town is small, there is a note in my card, it is impossible to get a job……you don’t take pills because you are at work… You will not get pills. No treatment. What do you do? Work? Maybe… you will get a job, but no treatment or food ration…. I work in a private place. It is necessary to go to the polyclinic to take pills. The workplace is far from the polyclinic. So, I am away from work for half of each day. The employer will say: “Get out!” (Male FGD)
Action/interaction strategies are purposeful or deliberate courses of actions, which are taken by individuals or groups in response to events, problems or issues, and which occur under certain conditions. The patients aimed their strategies at preserving their own passive position related to hopelessness. We discovered four categories in the action/interaction strategies component of the Paradigm model (see Figure 1). These categories imply behaviour of persons in order to understand “how” people delay getting a TB diagnosis, e.g., denying their own health condition, blaming others, avoiding health care services, and resorting to self-treatment.
Denying one’s own health condition appeared in the typical phrase: “It won’t affect me!” This led to a lack of motivation to visit a doctor and a low awareness of the danger. Some of the informants had a single experience of TB (a neighbour or a member of the family) or a lot of contacts with TB patients (in a prison or in their neighbourhood). They referred to their present or past experiences of getting infected by TB. This experience did not lead to awareness of danger.
I related with tuberculosis ill people before, but I think never it will touch me! They [ill people] were in another side of life (Female FGD)
I was in prison. There was a lot of tuberculosis; I saw many deaths. (Female FGD)
Blaming others was a typical way for informants to explain the reasons for diagnostic delay. Among the things blamed were the health system or some specialists, situations in their own lives, government, policy, etc. Blaming was used to excuse their own mistakes and passive behaviour.
There is no information about tuberculosis. I found posters in the hospital only. If I had known it before, I would have gone earlier [to doctor], (Male FGD)
The queues to the GP in an outpatient clinic are so long! How can I find time for it!? Moreover, very often they are not clever enough. (Male FGD)
Denying one’s own health condition and blaming others led to avoidance of health care that related to distrust in the health system. Informants were not aware of the severity of the disease, considering it as a ‘simple cold’. Culturally, fever for one to two days is not a reason to seek medical help, but for taking pills only. Cough is ‘normal’ for smokers and it is not unusual to have it for many years. Distrust in the health system led to feeling it was useless going to the clinic.
The fever was just two days and it was not so high. As for cough…I have had a cough for several years. I don’t remember how many exactly. It is usual for smokers, and I have been smoking for 25 years (Male FGD)
What is a medical assistant?! He has no good pills! I called for the emergency services. A young boy appeared. He didn’t even listen to me! I did not go to the doctor…. What for?! You have to pay for everything…. I had a fever of 39.5, but he said: “your thermometer is wrong!” We have two doctors in our village. They drink alcohol all the time! (Male FGD)
Feeling unwell made informants initiate action and people treated themselves, for example, for high fever or cough. The self-treatment period could last until the patient became totally exhausted and ill.
I thought it was a cold, so I took pills… In the spring and fall I always get a cold (Male FGD)
There was a cough … I thought, it’s due to dust… I had a lot of family problems and there was no time to visit the doctor. I have been working for months with such a fever (Male FGD)
Taking pills was a typical behaviour among the informants. They did it based on advice of others or from own experience. Many informants had heat applied in a sauna or using a local heater or mustard plaster.
I went to the sauna to get relief. I heated my chest… I didn’t know that this is dangerous……very fast…I took pills and ran to work…I took pills, and I became better…(Male FGD).
The consequences are outcomes of the action/interaction strategies chosen by the actors. Four categories emerged (including “motivated to seek health care by the threat of death” and “developed serious TB disease (such as MDR-TB)”) related to such consequences as “delayed TB diagnosis” and “decreased possibility of recovering” (see Figure 1).
Some informants checked their health regularly or promptly sought care after the first symptoms. Any deviations from normal feelings were motivators for them. Usually, these persons belonged to the “well-being” segment of informants and had good awareness of the disease and prognosis. In our research, these patients focused on the health system’s delays.
For most informants, only a deadly threat became a real motivator to seek medical help. They could not take care of their home or work due to weakness and their work, lives, and alcohol drinking were interrupted as well. Approximately 30% of those who had a diagnostic delay came to the health system by ambulance (unpublished data).
Naturally, the fear of death varied for different people but the principle remained the same. For instance, one informant reported about his experience of being in prison, where he encountered a lot of tuberculosis, but he did not seek help right away when the symptoms appeared. Another person had experienced the death of his brother, but the result was the same.
Some were motivated from inside and were aware of the dangers, others were taken to the doctor by relatives, while still other informants worried about social consequences and had a high level of social responsibility. The levels of motivation varied and could range from low to high.
It is necessary to scare people to understand that this disease is deadly; everybody will run to the clinic! Nobody pays attention before getting sick! I discovered blood in my phlegm…… I remembered movies about the war, just run to the doctor! I was sick but did not allow it to interfere with my life and work. When I could no longer get up from the bed…. (Male FGD)
Moreover, other consequences of the diagnostic delay included the increased risk of developing MDR-TB and the spread of tuberculosis in the society.
Causal, contextual and intervening conditions play their role shortly after the start of symptoms, while consequences are important close to the decision to go to the anti-tuberculosis dispensary (Figure 1).