Project financed by the Norwegian Grants 2009 - 2014, within the RO 19 - Public Health Initiative.
I believe that the whole family of the tuberculosis patient should be given counselling. In order to understand how to help the patient.
Andreea Dumitrescu is a psychologist and, for ten years, she has been working at the Marius Nasta Institute of Pulmonology in Bucharest, where she gives counselling to patients with drug-resistant or extensively resistant tuberculosis. She visits the ward on a daily basis and she talks to patients, she helps them accept their diagnostic, understand their disease, take their treatment or continue to have dreams after the disease has ruined their plans. Sometimes, she just listens to them, she is there for them and, once a week, she holds a group therapy session.
Did you choose to work with people with tuberculosis, or did things just happen?
It just happened. I was enrolled in a master’s degree programme on organisational and economic psychology. I had chosen this field because it seemed to me that it would help me find a job more easily. But it so happened that I was hired here. So, I abandoned human resources and I started learning psychological counselling and therapy. I was motivated by both the work itself, and by the projects.
You work with patients with tuberculosis. How are they different from other patients?
Compared to other patients with somatic diseases (cancer, asthma, COPD), TB patients fear transmitting the disease to others. Some do not know where they got it from, how it happened that they developed the disease. And there is also the stigma. When you have cancer, people feel for you, they are there for you, but when you have tuberculosis you live with the fear that the others might run away. Some people are very sincere and they tell their friends what happened to them, that they got sick, but not few of the patients told that opening up about it was like a sieve that screened out their friends. It is true that there are also patients who choose themselves to become isolated, but this also comes from the fear of not feeling guilty and rejected.
Some come with this belief that now, for two or three years, you do nothing and you are cured. Like one would put a little break on one’s life
How do TB patients see their disease? What is their relationship with the disease?
When they come to us, they are quite frightened. Few are those who actually understand what this disease is all about. I think that one of the benefits of the fact that they are hospitalised here (and not in other hospitals) is that they come to see the disease normally. For example, they see that the other TB patients act normally. They are sick for two or three hours after they take their treatment, but they generally have activities. When they become negative, they go to Carol Park, they go to the mall, they go for a walk. They talk, they gather in one of the hospital wards and they put on music, they tell stories, they have an absolutely normal life. These things build-up their confidence. “Well, it’s not that bad, it’s not a tragedy.” Then there is also the fact that the staff here treats them entirely differently. The doctors and nurses do not shun them, do not throw them three pills and then leave; instead, they talk to them, they stay with them until they take their medicines, they tell stories. And there is also the fact that they see other patients who come to the check-up, especially those who have only several months left of their treatment of two years, which is the length of the treatment for multidrug-resistant tuberculosis, or who have completed their treatment. We ask these patients, if they want, to come and sit and talk a little with the others, to speak about their experience. And when the patients see that there are people who have completed the treatment and who say that they resumed their activity after they completed their injection courses, they are more motivated. Especially that here we too recommend them to go to back work, not to retire (there are patients who come here from other institutions with this belief that now, for two or three years, they don’t have to do anything, as if they just put a little break on their lives). Here, on the contrary, people are encouraged to go to work. Of course, depending on their activity, because if they work in a mine or on a construction site…
Should they change their field of work, in certain situations?
Preferably, yes. But persons who work in a shop, in an office (or we also had patients who had worked at the airport) can go back to work without any problem. Equally, they can exercise. Well, not spinning, not bodybuilding, but a relaxing sport, like roller skating, yes. These activities also make their relationship with the disease more normal, and patients understand that it is not a tragedy. But they are pretty scared when they first come here.
Why do you think that they are scared when they come? Doesn’t the physician who communicates their diagnostic to them explain what tuberculosis is?
I don’t know what happens elsewhere, but the fact that the medical staff shuns them, that they are told that they must stay in hospital for a very long time, that the treatment is very difficult, that they are not allowed to do anything, that they must be on a medical leave for a year and then, if all goes well, to retire… When you are 30 years old and you hear that you have to retire it feels like vertigo. Students, for example, are told that they must interrupt their studies for a year. There are situations when they do interrupt their studies but this is generally not the case. Especially when patients find out the diagnostic in the spring. Over the summer they become negative and they are able to start the academic year normally. Perhaps the patient can’t go to school for one month, but then if the patient becomes negative and feels well, he or she may resume classes.
Patients help each other very much
How do patients react when they find out the diagnostic?
There are two stages. The first is the one when they are told that they have a drug-susceptible type of tuberculosis. They are told that they will spend one month in hospital, then they have six months of treatment and for four other months they take medication three times a week. In a way, this is hard but still, it is manageable. But then, two or three months after, when they find out that in fact their tuberculosis is treatment-resistant, it is more difficult. This happens because they have gotten used to the idea that they spend one month in hospital, then one month at home and then they should be able to go to work and only take the treatment three times a week. They expect things to be like this and then they are told that in fact they have a resistance to the medication and they have to be hospitalised for another three months, in a different place, and the treatment no longer takes six months, but two years. They get even more scared because they expect one thing and something else happens.
What is the atmosphere here, at Marius Nasta, where there are patients with resistant TB?
Generally, the atmosphere is positive. The patients hep each other a lot. We, meaning myself, the doctor and the social worker are here in the ward for a couple of hours but the patients stay here all the time and they encourage each other. The newcomers (the new MDR cases) are the most optimistic. Those with relapses or who do not react well to the treatment or who have been treated for years and the treatment did not work as well as they had hoped are pessimistic. They are no longer able to encourage the others by telling them “don’t worry, maybe things will work out better for you,” but instead they tell them “you take the treatment and you still won’t get better.”
Children are one of the strongest motivations to continue the treatment
What motivates the patients to follow the treatment?
Each patient has his or her own plans for the future. The motivation is personal. Mothers, for example, are very motivated by the children. They fight for them. This is one of the strongest motivations. However, there are also other cases that are more special. For example, men without a job, people who live on welfare, alcoholics. It is more difficult to deal with them, they need to be given more help. Most of the patients, however, have plans, they want things. There are some who say “not for me necessarily, but for the family.” Especially the older ones. “I am 70 years old. But I think about the children, not to get them sick.” And young patients want to have a family, to raise their kids. Most patients who are admitted here, at the Nasta Institute, complete their treatment. I don’t have any statistics, but this is what I have seen.
I believe it is important also for the medical staff to present the disease in a form that is as realistic as possible. Because maybe there is also this tendency to dramatize and then the patients feel very small in front of a big problem and they abandon. Or, on the contrary, there is the tendency to minimize the risks of abandoning the treatment (like in the 3/7 stage, in drug-susceptible tuberculosis), and then the patients think that, since they feel well, there is no point in having to deal with the side effects of the medication.
What does 3/7 mean?
Three of the seven days of the week. Two pills are administered in outpatient care, on Mondays, Wednesdays and Fridays. This is the last stage of the treatment for drug-susceptible tuberculosis. The last four months.
Why do patients who abandon their treatment do it? What demotivates them?
On the one hand, there are patients who experience severe side effects from the medication (vomiting) and they cannot cope with the treatment anymore. They must be helped not to interrupt the treatment for this reason. The doctor can determine the causes of the vomiting and may find solutions. But there are patients who do not understand this. Then there are the patients who do not understand the importance of continuing the treatment, after they become negative, for up to two years. “Why should I keep on taking the treatment if I’m negative? The microbe has died, I’m negative, I’ll stop taking the medicines.” They do not understand that if they do this they will become positive again, and when they become positive again they must start all over. There are also the patients with drug-susceptible TB who, after the first months of treatment feel better and no longer see the point of the last stage (3/7) and abandon the treatment. And their tuberculosis relapses.
I believe that the diagnostic and the disease must be presented in a realistic manner, and the focus must be on the fact that, in order to be cured, the treatment must be followed up to the end, even if certain patients feel there is no point in doing this. If they were informed and found out that that the risk of a relapse is close to zero if they complete the treatment (at least in the case of drug-susceptible TB), they would no longer abandon it.
I spoke to a patient who told me that he doses his medication over one or two hours for his body to cope with it more easily. This is the solution he found. When we talked, he had four months left of treatment, he was to complete it in December and wanted to become a peer-supporter for TB patients.
Yes, they have to take all the medicines within a certain time interval. These things are talked about with the doctor who either doses the medicines over certain time intervals, or explains certain principles for treatment administration.
The ways of coping with the disease and with the treatment also have to do with the patients’ inner structure
I have noticed that there are people admitted here who come from all social categories, with all sorts of occupations (students, farmers, journalists, lawyers, people from all fields of activities). Do they react differently when confronted with the disease?
Adherence to treatment has nothing to do with socioeconomic or professional status. Nevertheless, the way the patients react is surely different, because it is related to each person’s capacity to understand. A person who has a propensity for introspection, who analyses things, will find it more difficult to cope with the treatment. A person who is anxious will develop all sorts of somatizations but, in the end, will cope with it. There are persons who focus solely on the treatment. “For me, right now nothing else is more important, I have to do the treatment and that’s it.” When they complete the treatment they retire from active life. There are other persons who, on the contrary, they have nothing to do with it and they tell themselves “this is just a small part of my life” and keep busy most of the time, in order not to think about the disease. There are all sorts of mechanisms, of ways of coping with the treatment and with the disease. They have to do with education, but also with the inner structure.
The disease determines the patients to give up certain plans, including when it comes to friends and their job. How do they accept the changes, given that they have to do so, and it is not their own choice?
Some are not forced to do so, but they reach the conclusion that a change was in order. For example, persons who worked a lot (nine, ten, sixteen hours a day, including Saturdays) reach the conclusion that “these things happened to me because… and I exaggerated with work” and now reconsider their attitude towards their professional life and their personal life. Now they redefine their values. But there are also situations, especially in the case of people working the land or who work in constructions, when they somehow feel forced by the disease, they feel incapacitated and see the disease as an infirmity. It is difficult to accept that you will no longer be able to do everything that you used to do and that you will not be able to do things the same way. You to change the attitude towards the way in which you did things, on the one hand, and the way in which you did things, on the other hand.
It would be good for the patient’s entire family to be given counselling regarding the disease and the treatment
What role does the family play in the life of a TB patient?
Family plays a very important role. It must help the patients, from all points of view. For example, we now have a patient with MDR relapse. He completed the treatment and, in less than one year, he become positive again. He said that he took the treatment. Later on, he admitted that there had been days when he did not take the medicines. It is not my place to judge his family. He told me that he is the only provider in the home. His wife doesn’t work, although their child is in high school. He says that his wife doesn’t work because she couldn’t find a job, and when I asked when was the last time she looked for a job, he said “a few years ago.” She did not do very much for helping him be able to take the treatment. He is a taxi driver and perhaps he had days when, because of the medicines, he was sick and was unable to drive. And, as such, he did not always take the pills.
Family is very important. It must support the patient, not put pressure on him or her. Family members must compensate, find a solution, cut the expenses or find a different source of income. This happens many times because there are many people who, on paper, work on the minimum wage and, when they become sick, they must stay on medical leave with this minimum wage.
Therefore, not just the patient, but the family as well must be informed about tuberculosis (the disease and the treatment).
Yes. I believe that the entire family should be given counselling, in order to understand that the patient needs support, both emotional and in the management of the home (a woman, for example, should have some help, and not to be left to handle everything on her own, the home, the children and work). It is very important for the family to understand that this is a very difficult period for the patient (the patient is sick for several hours after taking the medication), to understand its role as well, to understand what the best approach could be, the most suitable way of relating with the person who is ill (because there also families who treat the patient as an invalid, who no longer let the patient do anything). The family must know what to do to really help the patient, to know what to do in order to be of help as a family, in the end.
How does the state support them? What rights does it offer TB patients?
If the patients live on welfare, the state exempts them from the hours of work the people who receive welfare must perform; the patients are entitled to medical leave paid one hundred percent, 365 days of medical leave, but if the owner of the company they work for does not approve it…
What other type of support would the patients need?
Psychological counselling is very important. They would also need financial support, which should be individualised, if possible. On paper, some patients work on the minimum wage and, when they go on medical leave, they are only left with what they have on paper. Some have big loans, others have no income at all. Support could also be given in the form of food. Or some of their expenses could be taken over from them, such as the payments for heating or building maintenance, during the treatment, or they could be given free transportation passes or be provided with packs of basic food. Any help would be welcome. Parents could be helped enrol to their children in kindergarten if, let’s say, they were unable to find a place, or they could be helped not to pay the meal charge at kindergarten, and so on.
You are here with them when they become negative. They come from all over the country, with a MDR-TB diagnostic and they become negative while they are hospitalised here. What are their reactions?
They are enormously happy, especially those who become negative harder. They say that the two or three days before the drool collection (i.e. saliva sample) and the two or three days after, until the results come in, are like the days before an exam. They have expectations, they calculate how much of their treatment they have left, when they could go home, how the treatment works. A negative saliva test means a lot, and for each patient it has a personal significance. However, not all patients become negative after the first month and, therefore, those whose saliva test is positive are disappointed because they have some more waiting to do. The same happens with those who become negative harder, after months and months. They have to be encouraged and this is difficult because the encouragement is in the form of statistical data, as we are unable to know how it will be in their case. You tell them that in our country, the average time until a negative test is of three months, and the WHO says it is a problem only if no negative test appears after one year of treatment, so it can take even up to a year.
What patients are the most difficult to work with, as a psychologist?
From my point of view, the most difficult to work with are the patients who first come with extensively resistant tuberculosis (XDR). It is very hard, especially if they do not become negative.
Sometimes, patients who meet in the hospital become friends for life
I have seen friendships growing here, in the hospital, which in some cases last for a very long time.
This is indeed the characteristic of people with tuberculosis, compared to patients with other diseases. They become friends, they stay together, they help each other, they encourage each other and they share food, money, everything they have. There are some patients who are poor and some who are wealthier but they encourage each other and they tell each other their life stories. They feel accepted, everybody has the same problem. Very strong friendships form, and they talk on the phone even after they are discharged, and they support each other. This happens because, in the end, your family understands you in one way, but a person who has gone through exactly what you go through understands you differently. Also, they help each other with the pills. If, for example, one patient does not have sufficient medicines or the order was placed later and he or she runs out, they call someone who has those medicines and that person send them and then the patient in question gives them back. Yes, they really help each other, not just cry on each other’s shoulders.
What makes them happy, the patients who are hospitalised here for three months or so?
The same things that make us happy. Good food, some entertainment, like when they put on some music and they dance. They gather up and watch movies on the laptop, they go out downtown or to the park. The normal things. And, of course, the things related to the disease and their hospitalisation: when they are visited by someone from home, when someone sends them something, when they become negative. It is important for them to be called on, especially by the family, but also by their friends, at least on the phone.