Ukraine: Drug-resistant TB patients need psychological and social support to complete treatment – Ukraine
In Zhytomyr, Ukraine, MÃ©decins Sans FrontiÃ¨res / MÃ©decins Sans FrontiÃ¨res (MSF) works with the Regional Tuberculosis Dispensary to treat patients with drug-resistant forms (R-TB). Most of the patients in this program can be treated with full oral drug therapy, including the newer drugs delamanid and bedaquiline, instead of the painful injections that were previously used and caused serious side effects. Once patients have been treated with short-term drug-resistant TB treatment, they are discharged with additional treatments they can take at home, allowing them to resume their lives, families and families more quickly. career. But many patients still struggle to keep taking their medication for the full 9 to 12 months.
âWhen I had tuberculosis, I lost the will to live. My grandparents told me TB was a slow death, âsaid Natalia Tsopa, drug-resistant TB survivor. *â During treatment I felt sick and tired. I also lost a lot of weight. I was irritable, I was depressed, and my psychologists, Vova and Lesya, gave me advice. I used to talk with psychologists about my family, about my aspirations and how to recover.
Counseling and social support can help patients stay on treatment even when it is difficult. âThe goal of eliminating tuberculosis has still not been achieved, due to multiple factors, including the lack of adherence of patients to treatment,â said Iryna Yakymuk, MSF psychiatrist. âMental health issues are one of the main reasons. Psychiatric illnesses and drug addiction, as well as psychological issues such as social isolation, stigma and self-stigma, all negatively affect patients’ adherence to treatment.
In order to improve patient autonomy, the MSF program offers a combination of directly observed (DOT), video-observed (VOT) and self-administered (SAT) therapies, tailored to the needs and abilities of patients. In DOT and VOT therapy, a trained health worker observes patients as they take their prescribed medications, either in person or via video-enabled smartphones.
Even with these systems in place, patients face other practical challenges. In the MSF program, patient support teams of nurses, social workers and psychologists work with patients with drug-resistant TB to understand and resolve potential barriers to completing treatment, from unpaid pensions to withdrawal. gas or heating in their homes. Drug-resistant TB can be cured, but only if patients are able to complete their treatment. Coordinated support for patients, including doctors, nurses, TB specialists, psychologists and social workers, should be a central part of their treatment.
The following testimonials come from patients who have been treated for drug-resistant TB thanks to MSF’s partnership with the Regional TB Dispensary in Zhytomyr. They reflect on their experiences with drug-resistant TB and the MSF patient support teams who work with them to understand and resolve potential barriers to continued treatment.
“I am now healed but there are still people who look at me differently” – Natalia Tsopa, former cook
My name is Nathalie. I am from Moldova. I came to this country in 2005 when I married my husband, a Ukrainian citizen. I worked as a cook and now I get odd jobs like doing dishes in restaurant kitchens or working in retail. I live in a rural area and have no neighbors. I had a small farm where I raised pigs and cows, but now I work in Kiev during the whole summer season.
In 2019, I had a swollen throat and an x-ray revealed that I had tuberculosis. I was afraid to go to the hospital because I didn’t want to be fired from my job due to illness. However, in March 2020, I was almost speechless due to my swollen throat. While I was afraid of spending money on my health, I had no choice. I had to seek appropriate tuberculosis care. On May 24, 2020, I was referred for admission to Zhytomyr Regional Tuberculosis Clinic. I have been told that I have drug-resistant tuberculosis.
My family supported me but the rest of the village community stayed away. I guess my medical information has not been kept confidential. Every day, I went to the clinic in Korea to receive medicine. Every time I walked to the station, I could feel all eyes on me. Everyone knew about my condition. I was ashamed. It was hard to bear.
During the treatment, I felt sick and tired. I also lost a lot of weight. I was irritable but Vova, my psychologist, was patient and tolerated my brooding behavior. Hospital staff and health workers from the outpatient tuberculosis service – an outpatient clinic – were helpful, attentive and in good spirits. I was depressed and my psychologists advised me.
I felt better after a month of treatment. I used to talk with psychologists about my family, about my aspirations and how to get well. After returning home, I also received food packages, hygiene kits, soap and detergents as part of my treatment.
My condition has improved; I gained weight and was more hungry than before I got sick. I want to tell all patients not to be afraid and to continue with the treatment. People fear hospitals for fear of how they will be treated by health workers, family or the community, not to mention the high costs of treatment. I am now healed, but there are still people who look at me differently. I ignore them. I look forward to living with my children and family again.
** “People may give up hope but I don’t want to” *** – Bohdan Cherniv, * electrician *
My name is Bohdan Cherniv * and I am an electrician. This is the third time that I have been admitted to this anti-tuberculosis facility. I was 24 when I was first diagnosed with tuberculosis.
My father was an electrician and died of tuberculosis in 2015. He told me that I had inherited his disease. I have high hopes for this treatment. I would have liked it to be available for my father who, like many others, would not then have been sent home because there were no drugs or they were too expensive.
I used the Internet to find out about the treatments and drugs available for drug-resistant TB in Ukraine. While nurses and social workers give me information on side effects and cure rates, I do my own research as well. The processing here is good. If you want to, you can be healed. You have to stick to the medications and the treatment regimen and of course lead a healthy lifestyle.
People can lose hope, but I don’t want to. I speak regularly with the psychologist at this establishment. I want to get back to work. I would like to get married and have a family.
“Having a plan helped me cope” – Vitalii Gorbachev, 56 years old
Before I got sick, I did everything. I used to hunt and grow my own crops. I have a farm. I grow wheat and corn among other crops. I was also stationed in Germany and served in the military. I have a brother in my family who is married and has children. I live with him. Life before tuberculosis was normal. I was active. I worked during the day – during the sowing season you have to work all day. Some days I was fishing. In the evening, I would join my friends for a drink.
It was quite spontaneous. I took a sputum sample to be tested. I am also a cook and wanted to find a job [that] required a medical examination. My brother had tuberculosis in November 2020. He was cured in the spring and spent time in the tuberculosis sanatorium. He suffered from shortness of breath, insomnia and fever. When my test results came in, I found out that I had drug-resistant TB. In November 2020, I was admitted to the TB dispensary in Zhytomyr.
Realizing that I was sick was unpleasant. I was shocked. I didn’t believe this could happen to me. I was really beaten by this disease.
My family got it and no one said anything negative about me. I haven’t lost any of my friendships in the village. With the hospital treatment, I didn’t feel any side effects, but it did affect my eyesight. In the ward, I have seen many patients with alcohol and drug addiction disorders. Living with tuberculosis and addictions can be a difficult life.
I was in the hospital for four months. On March 3, 2021, I was released. When I was in the ward, I started making plans for my farm. I asked MSF for seeds. The Patient Support Supervisor is also a gardener and she helped me get these seeds. I think having a plan helped me cope.
While the drug was very effective, the psychologist asked me many questions: Are you sad? What is bothering you? I couldn’t have said much: I want to travel, I want to go everywhere, but it’s difficult to have a job. I like to read. I have read Pushkin, Chekhov and Solzhenitsyn, but I prefer to read military stories.
I want to move on with my life and finish my treatment. I would like to meet a woman, get married and found a “nest”. I mean to other patients, if you don’t start treatment, [it is quite likely that] you’ll die. Tuberculosis can be cured, you just need to start treatment.
* Name changed at the request of the patient