Portraits of TB patients-field work writing.

(taken by Paul HM and it is the cover of his audiobook)

The followings are my old writings. I did them in 2014 when I was in Camau.

Unfortunately, my writing skill has not been improved. I wish I could edit and make them better. In the midst of Covid hitting hard everywhere, including Vietnam, I was back to my family who I could rely on and also provide some support, I thought about my time in Camau province. Perhaps the similarity of mask-wearing, vaccine, and the transmittable natures of Tuberculosis and Covid 19, triggers this memory.

I was hired by an anthropologist named Paul H.M who was commissioned by the Woolcock Institute in Sidney. This institution had a project on tuberculosis screening using Gene-expert. Paul and I did not involve in the screening but we approached this project from social and cultural aspects. I conducted all the interviews of people who received the positives. I transcribed the interviews and wrote and send them to Paul. Later he had an idea that we could write something about these participants. We did not go further about how to use them. Anyways, we just left them like this. Paul also wrote a children's book which I translated and read with a group of kids who sold lotteries and asked them about the story and we changed it to make it more approachable to kids. After the project, Paul made a crowd-funding and printed the book and sent them back to Vietnam. Here is the book in Vietnamese. This book has been translated into many different languages including Chinese, Indonesian, Hindi, Kannada , Tamil, Bengali, Mauritian Creole, Khmer, Russian, Turkish, Spanish, and Swedish. ,

(the screening staff in ACT3 project/Woolcock Vietnam), 2014)

--- The portraits of some participants who were diagnosed tuberculosis by Gene-Xpert. 1. As part of a pilot study, Woolcock screening staff were trialling a centralized screening method. At the workstation of an urban village, they had set up all the materials they needed to collect sputum samples from local residents and send them to the laboratory to be checked for TB. Local volunteers helped recruitment but participation was low and the Woolcock staff ended up adopting a door-to-door method in their later work.

Woolcock screening staff distinctly remember when Hoa, a man in his fifties, turned up at the screening station. At first, he was not able to produce sputum. He tried to cough but nothing came out. The screening staff was about to close his case, but Hoa was insistent that he wanted his sputum to be checked. “It’s unlikely you have TB,” said one staff member, “because you are unable to produce sputum.”

“I cough a lot when I smoke. Let me smoke and then I will be able to give sputum. ” Hoa replied.

The staff member gazed up at him and saw that he looked sickly. He did not seem to have healthy skin and he did not look strong. After some hesitation, she agreed that he could try again. When his sputum was sent to the laboratory, TB was detected via sputum smear microscopy. Hoa was one of the first and only patients to be diagnosed with TB in his village.

Hoa lived with his wife and helped to take care of their one-year-old granddaughter in Ca Mau, the southernmost province of more than 60 provinces in Vietnam. Outside the commercial center of the city, his house was along the main road about a kilometer or two from the airport. Only one flight a day operated to Ca Mau. Every morning at 6 am Hoa could hear a flight from Ho Chi Minh city arrive, and an hour later the plane would depart. Hoa had been to Ho Chi Minh City several times, but he had never traveled by plane.

Local residents made their living by working in food processing factories, small trade, or transport. Hoa worked in transport. a “xe om” driver. Riding a motorbike, he would carry people and goods from one place to another.

The front door of his house is facing the main street, and the other side of the house is looking at the big river. The small space in front of his house has different types of plants, but there is one herb he cares for the most. He said it was a very special plant he received from a friend to treat his cavity infection by a doctor who was charging him a lot for a lengthy treatment and finally told him that his cavity infection was never completely cured. He was mad at this doctor and questioned him “why didn’t you tell me in the first place? You have been taking a lot of my money and now you said so. Such an irresponsible doctor!”, then he left. After that, he sought different ways to treat this health problem but he was not successful until he received this plant from his friends. “I value this plant very much. You eat the leaves like vegetables. It is so easy to handle. Many people thanked me for my giving this plant to them!”.

When we called to interview Hoa, he had already completed several months of treatment. He invited us to visit his house rather than going to a coffee shop. He explained later that he did not want other people looking at us curiously and spread rumors. When we were inside his house, he offered us coffee which he ordered from the coffee shop close to his house. Sipping our iced black coffee, Hoa told us about his experience of TB treatment.

Hoa was the first patient the active screening project found when they conducted a pilot study in his village. In one conversation with field staff, I was told that the field staff remembered him when she learned about finding one patient in that village. She told me he showed up in the screening station in his village but he could not give sputum. He tried to cough but nothing came out. This field staff was about to close his case and called other people, but he told her that if he could smoke, he would be able to give the sputum and asked her to let him try. She said, “you could not give sputum, so it’s unlikely you had TB. Besides, you already tried several times”. He said he often coughed a lot when he smoke, so she looked at him again and she saw him not very healthy. He seemed not to have healthy skin and he did not look strong, so after a bit of hesitance, she agreed.

He said that he was actively involved in mobilizing people with other local officials to participate in the screening project. “I am a leader of my sub-village, I participated in the screening and followed the treatment later when I was diagnosed because I wanted to show people in my village that I do what I say. I am not the kind of person to persuade people to do things that I‘m not prepared to do myself. That’s why many people here listen to me and respect me. Of course, there are some people who do not like my honesty and straightforward personality, but in general, people liked me.”

Then he started talking about his experience. He said it was very hard in the first two months of my treatment. He wanted to quit many times. He emphasized, “I tell you, you have to be very strong-minded and consistent. Otherwise, you would quit the treatment because it makes you very sick. I even lost weight when I first took medication.”

“What else was challenging about your treatment?”

“Going to the health commune to get injections every day for the first two months!

“Why was that?”

“Well, the nurse at the clinic was very rude. She was young and she treated us with no respect. I showed up late sometimes because I had to work. The doctors told us to reduce our workload, but I needed to work to help feed my family. I could not stop working. As a “xe om” driver, I could not always control my work hours because of the customers’ demands. I always tried my best to be on time. But sometimes I would arrive about 30 minutes late. I knew it was my problem but I needed her to understand, not to criticize. I had thought about giving up going to the clinic and going to the pharmacy to buy Streptomycin and asking somebody to inject it for me. Some people I know did that for a month. But then I was afraid that if I did that I would stop caring about my health.”

The situation in the clinics made him angry. Hoa said it felt humiliating. “Nothing is worse,” He said, “nothing is worse than death and the nurses made me feel like I would rather die… I did not want to care about this disease anymore…. I wanted to give up so many times.”

“What kept you going?”

“Well, I thought to myself. I am a sub-village leader. If I can not overcome these obstacles, how could I tell others to continue their treatment? So I went back to the clinic and waited there until there was nobody but me and the nurse. I told her ‘you are a doctor and we have a saying that a doctor is like our mother (Từ Mầu) ( Lương y như Từ Mẫu) ’. You should be a good Mother to take care of your patients. What you have been saying to us is not correct. We are the same age as your parents. You make me feel like you are an evil mother (Ác mẫu). You make us want to leave our treatment and give up caring about our health. How could you answer to your superior about us leaving the treatment?’ Boy, I was so angry and upset.”

“What did she say?”

“She did not say anything for a while, then finally she said she wanted us to come here to take the medication in time. It is good for us but also she has to leave because she has a lot of work to do.”.

“How did you feel after what she told you?” “Well, after she mentioned she needed to leave because of her household duties, I felt empathy for her, so I told her, ‘The way you have explained it better than you did before. We need to understand each other. You need to understand our circumstances, we have to work to make living and sometimes, we could not control our time very well. You need to understand I am trying my best. You can tell me to make me understand by giving good and sympathetic comments that make both patients and you feel better. Our old saying is: words are free, so we need to select words to make everyone feel happy. [Lời nói chẳng mất tiền mua, lựa lời mà nói cho vừa lòng nhau] And what you have said to me makes is good and does not hurt my feeling’.”

He seemed very proud of what he did with the nurse and afterward, everything was better. However, this was just one obstacle among many. Hoa had to find strategies for other parts of his TB treatment as well. He reduced his alcohol consumption with his peers. Before commencing treatment, he would often participate in parties (ăn/nhậu) with friends, and by the time he left, he was very drunk. He did not eat well and his work was delayed. But when he started taking the treatment, he had to make an excuse to leave early.

“What did your friends say when you left early?”

“Well, they said I abandoned them and hung out with new people. I know they did not understand, but what could I do? I told everyone, including my family that I had tuberculosis, but a type of tuberculosis caused due to hard work. Vietnamese people call it“Lao lực” (physical consumption) and they believed me. I had a very difficult life and I have been working very hard since I was 15, so they understood that was why I had physical consumption and they were not afraid of having close contact with me.”

“How did your family help you during your treatment?”

“People, especially family were worried about my health but they did not understand even when I told them I have tuberculosis. In general, I took responsibility for my treatment”.

“How did you manage it?”

“I got up before 5 am, and after doing exercise, I made tea. When I reach tea and water to make tea, I would see my TB medication. I let my medication close to my tea to remind me. I take medication while I wait for my tea. By arranging my tea and my medication, I never forgot.”

“How do you feel now about your treatment?”

After injection, I feel much stronger. I feel good about reducing drinking with my male friends. I have more time with my family and I feel stronger. I reduced smoking but I did not quit it, because I saw my cousin who quit smoking and he developed high blood pressure. You know, people might not die of smoking, but of high-blood pressure”.

Four months later, I met Hoa again. He looked very healthy and was about to complete his treatment in ten days. He told us again about his experience in the clinics and emphasized the need of having a strong mind to overcome the obstacles experienced during TB treatment including the side effects of the medication. After leaving he told us “ My wife and I babysit our 1-year granddaughter and I look closely to every symptom she has to make sure she doesn’t have tuberculosis. Is there any tuberculosis vaccine they can all take so I would not have to be worried about them having tuberculosis anymore?”

--Portrait 2: Ha’s story

Male 34.

As part of the ACT3 active screening program, people diagnosed with TB were referred to the National Tuberculosis Program (NTP), with responsibility in Ca Mau given to the Centre for Social Disease Prevention (CSDP). This center monitored the tuberculosis cases in the whole province by receiving reports from all districts’ local health centers throughout Ca Mau. The CSDP also referred patients to the tuberculosis department of their home district’s health center when the CSDP diagnosed any cases. These cases were often called passive case finding because the patients came to the center on their own after they experienced many symptoms and suspected they had tuberculosis. The tuberculosis department at each district health center followed up on the TB cases in their district and sent reports to the CSDP, which later sent the reports to the NTP in Hanoi. At the district health center, there was one doctor who prescribed medication for TB patients. He or she was also responsible to change medication if there were any side-effects experienced and reported by patients. The tuberculosis department at the CSDP has several doctors and nurses and they were also able to refer patients to take blood tests and X-ray tests in the CSDP facilities.

When ACT3 worked with CSDP, ACT3 found patients and invited them to the CSDP, which referred them to district health centers as a passive-case finding. However, the difference between passive case findings and active case findings was that patients of the active case finding were healthier and did not have as severe symptoms as ones in passive case finding.

Before ACT3, district health centers often sent passive case findings to the district hospital where patients were required to stay about 2 weeks to 2 months.

Ha was one of the first patients that the ACT3 referred to the CSDP, which in turn referred him to his hometown. At that point, the procedure was new to the health district center, which was very familiar with passive case findings but not active case findings as that which ACT3 referred. Thanks to Ha’s proactive health-seeking behavior, the ACT3, the CSDP, and the health district center were able to refine their procedures.

Ha was a 34-year-old male patient from an isolated and poor village in Ca Mau province. Unlike other patients, Ha asked for phone numbers of ACT3 staff members including my own. He was very interested in his health and asked for lots of information and expressed many concerns. Thanks to his call, we learned that patients in that district were sent to the hospital where they might receive free medication but had to pay for tests and their hospital stay. Many poor TB patients in that district were sent to be hospitalized, and this was causing a lot of confusion. They believed that the treatment for tuberculosis was free until they went to the hospital to learn only medication was free.

Most people in Ha’s village made charcoal by burning trees they collected in the mangrove and cajuput forests. They also made a living by growing rice or culturing shrimp. For people in this village, everything related to cajuput trees [“tràm”]: planting, collecting, making charcoal, harvesting honey, and fishing in the forest. All of these activities required manual and physical strength. In general, it was a very poor village facing a lot of problems with infrastructure because it was far from the commune and district center. Many kids in the village often left school after finishing only primary school, because the secondary school is very far from the village. Going to the commune center from the village took at least thirty minutes on a motorbike. The district center was much further away. In the village, there was a retired military health worker whose house can only be reached by motorboat during the day. It was very dangerous to visit him at night because trees cover the bank and even the water. The health worker was kept very busy and treated many people with health problems from the village. He was encountering many people he suspects have TB and he was often right.

Ha had two kids and he engaged in a wide range of occupations to make a living. He was a mechanic and xe-om diver when he was diagnosed with TB by ACT3 screening staff. Two years ago, he was a truck driver for a rice processing factory in Bac Lieu, a neighbor province, until he found himself coughing with blood. He thence panicked and left the factory. He went to the doctor after this experience coughing blood. The doctor he met suggested he had a ‘stain in his lungs’ [‘nám phổi’] and if it became serious, he could develop tuberculosis. In the interview with ACT3 staff, Ha recalled this experience and blamed his working environment for having damaged his lungs.

“You know, there was a lot of dust. I used a mask but I did not believe it helped. Dust probably got into my lungs.”

Then Ha continued to tell about his past health-seeking behavior after his experience of coughing with blood before he was diagnosed by ACT3. He said after meeting the private doctor, Ha went to different hospitals with a belief that he had TB because of his symptoms. To him, it was likely Tb because he coughed a lot and he felt so heavy on his chest. He could not work well Because of his coughing. However, except for the first doctor who suspected that he had TB, all of the hospitals he visited (where he had to go through all kinds of the test at each: blood test, x-ray, and sputum tests), no place told him that he had TB. While he was convinced that he had TB, the hospitals he visited diagnosed him with pneumonia and prescribed him many types of antibiotics. He took them but still felt his chest was very heavy. He felt hot but afraid of water. He said “I told my wife that I felt cold but she found that I sweated a lot at night. I felt exhausted after visiting many places without being cured. I did not believe their tests and diagnosis.”

Ha proactively called the team leader to ask about his results, and he came to the CSDP immediately after being told about his positive diagnosis. There, he was very worried, but much to the surprise of the screening staff, Ha was very happy and relieved when he received his TB diagnosis. It was the confirmation he had been looking for over the last couple of years of searching for treatment. He felt he could trust the results from the ACT3 screening because the technology the program used confirmed his suspicions. “Having whatever disease, including tuberculosis makes you worried and not happy. But now I feel such a big relief because I could pursue TB treatment from now on”, he expressed.

Ha was very active and demanding. He did not want to be sent back to his district for treatment. He argued with a health worker who was writing a referral letter to the tuberculosis doctor in his district.

“I am not going anywhere. I want to receive the treatment here.”

The health worker was very surprised by Ha’s attitude and while this health worker was still very confused by Ha’s demand, Ha came out to find us and asked why he was sent to his district. We explained the procedure and asked him why he did not want to go back to his district to receive the treatment.

Ha said “The district health center did not find me to have tuberculosis. How could I trust them to treat this disease for me?”

He did not listen to the health worker from the CSDP until the ACT3 staff members explained to him more about the ACT3 program as well as the ACT3’s role in helping diagnosed people, including referring TB-positive patients to the appropriate treatment center. After he understood more about the screening program, he did not pursue his request further.

Without delay, Ha went to the health district center and he called us again to state that he was sent to the district hospital. He was told that he had to stay in the district hospital for about 20 days. His voice was almost cracked with concern.

“Nobody told me I needed to stay in the hospital and now the health district center sent me here. The hospital asked me to pay for another X-ray and blood test as well as hospital fees. Who is going to feed my family? I am the only one who is working to feed my mother, two kids, and wife. If I need to stay in the hospital for such a lengthy period, I am not sure I can pursue the treatment.”

After learning from Ha about the hospitalization of patients found by the active screening program, we informed the CSDP and the project manager. With the intervention of the head of TB program in Ca Mau, an urgent protocol was applied later on that all TB patients found in active screening were not required to be hospitalized because they were found in an early stage and were thus less likely to infect other people.

An elderly TB patient from Ha’s village had the same experience. The elderly man was identified as a TB suspect by the screening team, he had his diagnosis confirmed at the CSDP, and he was hospitalized when he went to the district health center. He had not informed ACT3 about his hospitalization. Although Ha had wanted to keep his diagnosis to himself, he told the elderly patient’s family that he did not need to stay in the hospital. Ha gave them the personal phone number of one of the ACT3 staff members who referred the second patient to the ACT3 project manager.

Ha did not want anyone outside his family to know about his diagnosis. He told only his wife and his mother. His family--even his brothers--did not know anything about his diagnosis. He found many excuses to tell them why he had to go to the CSDP, but he did not admit to anyone his diagnosis.

Two months later, Ha seemed very happy with the progress of his treatment “I never forgot a day. When the doctor told me to take medication at an exact time every day, I asked him how late or early would be possible? And he told me about 30 minutes. He told me to take medication for one month and I needed to see him again to pick up medication. I asked him how early I could come to see him. I did not want to wait until the last day to pick up medication.”

Then he shared his experience with the side effects of the medication and how he handled them: “at the early stage of my treatment, the side effects were horrible. I had to ask the doctor to change medication for me. Then, I asked his number so I could call him when I was worried about medication and side effects. The trip from my house to the district center was very far, so I always called him before I came to the district health center. My strategy was to develop a good relationship with the doctor and have his number, so I could ask for information and express my concerns”. He was proud to share another strategy to manage his medication, “I divide my medication; one always in my motorbike with a bottle of water and the other half I leave at home. Sometimes, I work in the forest. I prepare my medication and leave it in the pockets of the clothes I am going to wear the next day. I also set up a specific song on my phone about hope to remind me to take the medication, whenever I hear that song, I know I need to take medication. The song keeps my spirits up too.”

Hiding his diagnosis while strictly disciplined to take medication, Ha was questioned on several occasions if he took tuberculosis medication, and depending on the situation, Ha chose to admit or object. For example, one time he was asked that question and he admitted that it was medication for TB, and he shared this experience. “Yes, this is medication for TB”, I said, but ironically, when I admitted that, they did not believe me. They expected that I was rejected, and I understood that they expected the rejection from me, so I admitted that I had TB and they then believed I made a joke. They said, “no way, you do not look like you have TB. People with TB do not look like you.”

However, Ha met some difficult situations while he attempted to hide his diagnosis. Sometimes, he went to the district health center to pick up medication and he met other patients or these patients’ family members. Both Ha and these patients did not want other people to know about their diagnosis. Ha hid his diagnosis. “I will tell everybody when I complete the treatment. My work is related to other people. If people knew I had TB, they would not hire me anymore”.

Five months later, Ha and his wife came to share his experience of his treatment and his health-seeking behavior before participating in ACT3 with the Woolcock staff members in Ca Mau. He was confident and very critical about the credibility of the local health systems. He expressed his concern about the accuracy of the tests in his health centers.

“How do I know if I am free from tuberculosis? The doctor there told me that they would do an X-ray test and a sputum test for me after I complete my treatment, yet how could I be sure if these tests tell me the truth?”