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Improving the health of the population in Romania by increasing TB control

Project financed by the Norwegian Grants 2009 - 2014, within the RO 19 - Public Health Initiative.

The Association for the Support of Patients with Multidrug-Resistant Tuberculosis (ASPTMR), in partnership with LHL International Tuberculosis Foundation, a patient organisation in Norway, performs within the project activities related to the training of medical practitioners and TB patient workers to help them develop very effective communication skills in a very short time, in five minutes.

Also, they built a network of peer supporters (most of them former TB patients who now help those who undergo treatment) for patients with multidrug-resistant tuberculosis, and also edited a brochure which will serve as the basic tool for the provision of information to TB patients. We have details about all these from Cătălina Constantin (photo), the ASPTMR chairwoman.

– How did you come up with the idea for these joint courses for specialists and patients?

– The medical environment of the TB facilities network has a certain background of beliefs and assumptions. To maximize the impact of the information, we placed these people in different situations. We did not organise courses for physicians and, separately, for nurses or other categories. Instead, we organised joint courses for physicians, nurses, former patients, psychologists… several types of specialists who work with TB patients. Being such a heterogenous group, regardless of the information and beliefs they came with, and because they were involved in interactive activities, they managed to understand the situation better form the others’ perspective as well. In this way, all participants were able to change their perspective. The physicians were able to better put themselves in the place of patients, and the patients in the place of physicians and so on. Because the main problem is that many times they do not communicate well. Medical practitioners expect patients to understand the information the first time they are told, and patients expect the physician to be somewhere on a pedestal and do not see him or her as a person capable of understanding, while social workers and psychologists are often seen as outsiders in the care setting and so on. When they were all brought together, they understood each other, they saw how the situation looks like when being in the other’s shoes and they managed to leave the training sessions with another perspective, which I hope helps them. I have met a great deal of people in the medical system who suffer from burnout, who, emotionally, are on the brink of failure and who feel overwhelmed by the fact that they also have to do things that are of no help to the patient, a lot of administrative paperwork… In these courses, we also teach them strategies for dealing with stress, one of them being to do mindfulness meditation to maintain their focus.

– What is the biggest problem that physicians point out to in the relationship with the patient and what is the biggest problem that patients point out to in the relationship with the physician? Do these two problems meet at any point?

– They certainly do meet. Physicians blame the lack of time, which I think is also caused by the fact that they are not sufficiently trained by the system that should have trained them with regard to time management, stress management, effective communication, conveying the message and delivering the information to the patient in doses. From the patients’ perspective, when they receive the tuberculosis diagnostic, they stop hearing pretty much everything else they are told. Then, there is the change that intervenes after they are discharged from hospital and start outpatient care; all of a sudden, patients feel removed from an environment where they felt safe. In the hospital, if they got sick, there was always someone there, the nurse, the attendant. When the patients are sent home, the feelings are divided. On the one hand, they are happy that they are out of the hospital and are together with their families, and, on the other hand, they are anxious and worried because they have to come into contact with a new medical team, they must face – alone – assumed or possible health problems that may appear because of the treatment. If you speak to them and explain organisational aspects, the documents and papers that they have to obtain, if you speak to them about the notions related to what tuberculosis means, how it is treated and what its symptoms are, they get so tired at a certain point because of all that information they have to remember, that they have a mental block and are unable to follow you from that point on.

I believe that, in many cases, the physician judges things from his or her level of understanding, which is very high, without realising that the patients’ level of understanding, regardless of their training, is very seriously influenced by their state of mind. The information delivered to the patients must be structured according to the priority: what is the most important thing I have to convey to the patients when they come to take their treatment or have their tests done? Each time the patient comes, the physician or the nurse or the psychologist, depending on each case, must provide some more information.

– So, the patient must be provided with information gradually, to be able to assimilate it.

– Yes. And to be repeated the important information. Otherwise, the message doesn’t get through. Often, there are situations when the patients do not understand the importance of hospitalisation and they say: “What do you mean, I spend Christmas in hospital?” And the physician does not always understand this attitude, because he or she thinks from the perspective of the responsible person. They think it is normal to want to stay in hospital during Christmas, in order to be at home and healthy the next Christmas.

– Because the physician has infinitely more information than the patient?

– Not only because of that, but also because the physician is outside the patient’s problem. That patient only sees the fact that, during the holidays, at a time of maximum importance to him or her, they are taken away from their family and held in a place where they are given a tag – the tag of a patient suffering from a severe disease called tuberculosis. And at this point there is need of a little more empathy on the part of the medical practitioners and of more understanding for the patient’s needs other than the physical ones.

– You have developed a patient-friendly brochure together with the LHL in Norway.

– This brochure has been compiled with the help of several tuberculosis patients and is dedicated exclusively to tuberculosis patients. Its aim is to ensure accurate and proper information, to facilitate understanding and increase patient responsibility, resulting in treatment adherence, as well as to help in the patient’s relationship with the physician. We made a first variant of the brochure and then we tested it with other patients, asking them whether they understood the information, whether they had anything to add to what was included in it, whether they wanted other things in the brochure in terms of form and content. Based on their suggestions, we developed the second variant of the brochure and gave it to other tuberculosis patients. We again made changes and now we hope it is a useful tool that the patients may keep with them. We want it to provide simple, clear and relevant information which may be understood by all the people who read it, regardless of the physical or mental state they are in at that particular moment. Every time they have questions or have not understood something, or when they are unable to remember what the physician told them, they may read about it in the brochure, which in this way is useful to the physicians as well, helping them communicate.

– How will these brochures reach the patients?

– We will print out 10 000 copies which we will distribute in the National Tuberculosis Prevention, Surveillance and Control Programme (PNPSCT) network. We have a partnership with the National Penitentiaries Agency (ANP). There are more tuberculosis patients, not just 10 000, but the brochure may be multiplied at any time.

– You have another interesting activity, the patient support network.

– Yes, we have recently organised a support network for patients with extensively drug-resistant tuberculosis (XDR), a network of peer supporters formed of volunteers who ensure the psychological support for the patients who undergo treatment, in particular for the Group 5 medicines.

What are Group 5 medicines?

– Group 5 medicines are medicines that cannot be found in Romania, they cannot be obtained through the Romanian medical system, they are bought exclusively from abroad and are new medicines in the treatment of tuberculosis, still under assessment. These are very expensive medicines, with a very big impact on the body, with side effects that are difficult to bear by the patients. This is also why patients who take Group 5 medicines are admitted for longer periods of time compared to those who take the other types of treatments. Not all XDR patients can take these medicines, because they are only administered under certain conditions and only the physician may say whether a patient is eligible for taking this treatment.

Where do you recruit volunteers for this network from?

– There are many persons who want to work in an NGO. Psychologists, social workers… And, because we provide services for patients with MDR-TB and not only, we also recruited volunteers from among such patients – persons who are willing to work, who can cope with this kind of service. We have trained them by providing communication courses and interventions based on their needs, such as interventions related to self-esteem, trust and so on. Being peer supporters helps these patients or former patients heal themselves not so much from the disease, but from the experience. With former patients, the disease has been cured, but the experience has not, and this helps them reintegrate by helping others, it is like a gradual desensitisation. They expose themselves to the problem without in fact being in that problem and then they realise that they are past the phase in which the people they support are now, they realise that they had resources and now are able to help others… It helps them heal on the inside.

– How many peer supporters do you have now in the project and how many patients do they work with?

– We have 15 peer supporters working with 45 patients. There are psychologists who work on patient evaluation, we have the diagnostic – with the patient’s and the physician’s consent –, we have the treatment and the adjacent diagnostics so that we may get an image that is as complete as possible on that patient’s suffering. We perform a social evaluation, to see whether the patient needs help in terms of various aspects, and we also perform a psychological evaluation. The psychological evaluation looks at the patient’s degree of motivation to follow the treatment, at the patient’s limits and resources. Patients are divided according to this overall image and according to the profile of the volunteers we have in the network. Among the 45 patients evaluated and introduced in the peer support work, apart from two who died, all the others are treatment-adherent. Because, as one of the former patients said, you do not heal from tuberculosis when you complete the treatment, but when your soul heals as well.