We approached all 254 in-patients admitted between January and July 2018. Of these 254 in-patients, 66 did not meet our inclusion criteria as either under 18 years old (n=12), being discharged within a week (n=23), diagnosed with XDR TB (n=5) or too ill to be interviewed (n=26). Of the 188 eligible, 38 declined to be interviewed and 150 completed the initial demographic questionnaire. Of these 150, two patients left hospital (without being discharged) and were therefore not assessed by the psychiatrist using the SCID tool (22).
Table 1: Participant characteristics – insert here.
Table 2. Prevalence of depression by severity as measured by SCID – insert here.
A total of 33.8% (95% CI: 26.7%, 41.7%) of patients were diagnosed as depressed (with either a mild, moderate or severe level of depression) via the SCID tool, with most patients diagnosed with either mild or moderate depression (Table 2). Our logistic regression model only identified two variables that were statistically significantly associated with depression in our sample: patients with one or more co-morbidities had 2.88 (95% CI: 1.13, 7.33) times the odds of being diagnosed with depression compared to patients with no co-morbidities and patients who were new MDR-TB cases had 2.33 (95% CI: 1.06, 5.14) times the odds of being diagnosed with depression compared to previously treated MDR-TB cases.
Table 3. Logistic regression exploring associations between socio-demographic and health related variables and a SCID-based diagnosis of depression. – insert here.
Table 4: Qualitative interview participant characteristics – insert here.
The qualitative findings provide insights into the interlinking factors which are driving the challenges facing patients with MDR-TB including those presented above in the quantitative analysis, but also provide further depth in understanding poor mental health among patients. The socio-ecological model (21) was used within the analysis to show how these factors operate at an individual, relational, societal, institutional and policy level. These headings are used to structure the qualitative findings below.
Individual level
Dealing with side-effects
The majority of the 8 patients interviewed described experiencing one or more of the known side effects of their medication including vomiting, headaches, blurred vision, aching joints, hearing loss and imbalance. The impact on mood was also clear:
“Like yesterday… I was planning not to take the medicines. Why? Because, I cannot tolerate it anymore and my mentality has been in such distress that I wanted to skip the day’s treatment.” (TBPM04, MDR-TB patient, male)
Health professionals were very conscious of the impact of these side effects on patients’ mental well-being and how this could influence their commitment to continuing treatment:
“When these situations (side effects) occur during the first three or four weeks of treatment the patients get quite depressed. They think, ‘I am taking so many medicines; but still my physical condition is worsening day by day’…. There are incidents of patients who abscond from the hospital. One of the major challenges we face is when the patient stops taking treatment. Sometimes the patients think that the treatment will not work for him or her because of their depression. What happens is that the patient may receive the medicines everyday but not take them and throw them away somewhere. I think, this is one kind of expression of depression of the patient.” (DR01, Hospital doctor, male)
Continuing low mood after treatment completion
The feelings of low mood were identified by many, including the health providers, as a continual experience, not just linked to taking the medication. The interviews with cured patients highlighted how, for some, even after being successfully treated the feelings did not subside:
“The things that depressed me before are still depressing me now. Such as, I couldn’t finish my study, which is very sad for me. Secondly, this was not for a year or two, this was five years. For these five year of gap, I have lost many things in life. Compared to other girls, in life I am sacrificing a lot of things. These things still hurt me mentally. If I tell anyone, they will ask me to forget everything. It is easier to ask to forget, but difficult to do. That is why I don’t tell anyone. I just stay by myself. I am just waiting to see how long this depression will last.” (CPF01, Cured MDR-TB patient, female)
Diagnosis and Dealing with multiple health problems
Many patients described a complex route to TB diagnosis, seeking diagnosis in a range of private and public facilities. Many were unclear regarding their diagnosis and were not specific regarding other health conditions that they faced. However, what was clear was that these multiple diagnoses compounded the worry felt by patients. This young, married patient describes how she became ill following the birth of her child:
“I went to the TB-centre at the Upazila [sub-district health centre]. There, I underwent three diagnostic tests, but my disease was not diagnosed. After that I went to see a doctor of [diabetes clinic] who also treats patients here. There, I had diagnostic tests for my whole body. The doctor said that I have liver problem, jaundice, anaemia & some chest problems. Then, I was in doubt. I went to a private hospital & did an x-ray. With that x-ray & other diagnostic reports, I went to BRAC [and was referred to this hospital] … I am still taking the drugs and I started to feel ok. But now, another problem has occurred, I have a breast-tumour. Now a specimen will be taken today for diagnosis. Right now, my mind is (laughter) ok; but deep inside I am worried about today’s diagnostic test. I am already taking one sort of medication right now; but now I am having another health problem. Who knows what will happen next? Thinking about it, I am stressed right now.” (TBF03, MDR-TB patient, female)
Building personal resilience
The patient interviews highlighted the different ways patients found to take their mind off their condition through talking, singing, playing board games, and for those who had mobile phones, listening to music and looking at photos. Some male participants, particularly those with higher levels of education, also talked about writing diaries and songs:
“The truth is, whenever I feel tense, I sit down with my paper and pen. That’s the time I feel I want to write. I want to write in an effective way so that I can tell each and every person in Bangladesh about this disease. Sir I want to write in such way so that I can express my feelings to well-known lawyers and doctors through my song or through my words. Then this disease can be beaten completely. Otherwise all the young people, my children will be destroyed.” (TBM03, MDR-TB patient, male)
For others, religion proved a powerful source of hope and reassurance:
“My son says his prayers five times a day, he prays to his Lord. That can give him mental peace.” (CGMP01, Care-giver, mother of MDR-TB patient)
“I overcame my depression praying to Allah by saying, ‘Allah I have lost everyone, but you are my hope’. I had this faith in Allah.” (CPM01, Cured MDR-TB patient, male)
The role of information and knowledge gained either from health professionals, or more commonly from their own experience or talking to other patients, was crucial in helping patients to keep the impact of the side-effects in perspective. Understanding that these were side-effects of the medicines, rather than symptoms of their illness helped some patients to find ways to cope:
“Towards the beginning I used to consume the medicines in the morning. I noticed that I would feel bad the entire day. I would feel demotivated to shower or to go grocery shopping. As a result, I changed my routine to take them in the afternoon. I’d take a nap or rest for a bit. Then towards the evening I would start to feel better again. It takes about four to five hours after taking the medications for me to start feeling better.” (TBPM01, MDR-TB patient, male)
Relationships and Family
The relationships with those around them and with family members were key to patient’s ability to cope with the physical and mental challenges they faced. There were considerable differences based on gender, age and whether they had had to relocate away from their families.
Spousal support
Interviews with male patients and their wives demonstrated the commitment of wives to caring for their husbands. The researchers’ observations indicate how these differences impacted on the day-to-day welfare of patients as well as their mental health. For example, the male ward was frequently filled with female carers cooking, cleaning for and supporting their patients, whereas the female ward had fewer carers and while some had stoves for cooking few had the energy to buy groceries and cook for themselves. Wives commitment to their husband’s health was frequently expressed:
“After he was admitted here, my husband told me not to go near him. I didn’t pay much attention to his instructions. Let me become infected. I told him if I contract the disease then we’ll die together. But I will not succumb to the idea that I cannot feed him and take care of him just because I may be infected as well.” (CGFP02, Care-giver, mother of MDR-TB patient)
And as this husband explains about his wife:
“She says, “You see, today you are suffering from this disease, but don’t be scared of it. Someday everyone will die. I will never ever leave you. It doesn’t matter what disease you get or how contaminating it is. I am here with you and I will always be.” Yes, she says so and she stays with me and this gives me positive energy.” (TBPM03, MDR-TB patient, male)
For the wives, even when husbands were supportive, the wives themselves encouraged them not to visit, but instead to support the family at home:
“My husband supports me. I request him not to come here; because there is no use of coming here. I am taking the medicines and I will be cured. If he remains seated beside me, will my problems be solved? `Instead, if he works.. I have a child and there are some expenses for my child, my husband also has some expenses. My family cannot bear all his expenses; he cannot remain seated beside me.” (TBPF03, MDR-TB patient, female)
All the carers of female patients that we were able to interview were mothers of the patient. Where these women were bread-winners for their families they struggled to bear the opportunity cost of coming to care for their daughters. When husbands abandoned wives, it fell to the mother to provide care:
“No, he [the husband] didn't take care of her. I have bought her here; he came to see her only one day. Then I told him: "son you married her after seeing we are poor, now we can't give medicines to our daughter, give us some money so we can give her medicines." He replied, “you always want money". So, that's okay, we don't want his money! Now if we can help her or not, that is our only concern.” (CGFP01, Care-giver, mother of MDR-TB patient)
The challenges of relocating to hospital and being far from children was frequently raised by the female patients and the break in this relationship, concerns for how their children would be cared for in their absence, coupled with their fear of infecting family members further fuelled their anxiety and lowered mood:
“She says she doesn't want to stay here: “I have two children. I want to go to the village. I don't want to stay in Dhaka.” As I told you, she feels bad for her children. She can't take care of her children. She can't feed them. Her son cries. He calls her. Then she feels sad. People strike her son. With that tension, she feels sad.” (CGFP02, Care-giver, mother of MDR-TB patient)
Male patients’ concerns frequently focused on the livelihood of their families and feelings of guilt and worry that they were unable to provide for them:
“Whenever I ask him, he just replies that he is worried about his family, his children and his home. He feels bad that he contracted this disease at such an early age. He stays sad thinking about these things.” (CGMP02, Care-giver wife of MDR-TB patient)
Those with no family support were clearly identified as facing particular challenges, both in terms of loneliness and low mood, but also in eating healthily and caring for themselves:
“For instance, I’ve noticed that some patients do not have any family members who visit them. There are two or three patients here who are completely alone. That’s one thing they suffer from, loneliness. We have family here and they don’t. They see this and they feel this absence, they feel the loneliness. Some do not have enough money. Here we are told that the government will take care of everything. But except for the rice, the rest of the food they provide - the vegetable, meat, fish at night - are inedible. As a result, we have to spend money. For some patients they do not receive any monetary help from their families.” (TBPM01, MDR-TB patient, male).
Societal Reponses
Social stigma of TB
Within the interviews, participants often struggled to talk about the levels of stigma they experienced. Frequently, at the start of the interview they would deny experiencing, but by the end many shared their stories of the negative reactions of their extended families and wider society. This female patient explains how the stigma from wider society can lead relatives and husbands to abandon their wives:
“When I came out of my room [at home], nobody stayed around. Everybody went inside their room. When I put my washed clothes to dry, they moved my clothes away. After facing these things for many days, I said to them, “This disease affected me, so you are doing these things to me. Just think, if you had this disease.” After saying this, some people kept contact with me and some people did not. When, I was first admitted to hospital, my cousins came. After that, nobody came. And now, no one comes to me. … All the in-laws are (laughter) different kinds of people. Despite of my condition my husband kept me; so now others fight with him. They ask him why he kept a diseased wife, they also say that he will catch this disease someday.” (TBPF02, MDR-TB patient, female)
When asked what might be driving the level of stigma within society, many identified infection and lack of knowledge about TB treatment. One patient also identified the perceptions of risk behaviours of patients:
“People think they have got their disease from their addiction to cigarettes, tobacco or other drugs. Because of this they consider us differently from their heart.” (TBPM03, MDR-TB patient, male)
The impact of the societal view of TB, and particularly MDR-TB were clear:
“Sometimes I feel like I will go to [the doctor] and say, “Sir, living our life may have some significance for our family members; but we do not have any value in the eyes of other people.” You can only provide us with treatment… So, it is better to just to kill us. I said, “Please give an injection to kill me. We are not able to stay in this society. So, kill us.” (TBPF02, MDR-TB patient, female)
Patients had the option to leave the ward to buy food in the stalls near to the hospital, however this brought its own challenges:
“I don’t tell them [shop-keepers] about my condition. But if I wear a mask then they do not let me shop or even serve food… I feel terrible. I can’t even go out and get a haircut or get a shave. If we go out to nearby shops for buying groceries, then we have to either take the mask off or they won’t allow us to get close to them… It seems like death is a better option than being treated like this.” (TBPM03, MDR-TB patient, male)
Peer support
Despite the challenges of living away from home as an in-patient, the majority of patients, male and female, shared positive experiences of the peer support among patients on the ward. One young female patient described how she and an older patient supported each other through times of low mood and optimism:
“But after a while, she went into depression like me. She didn’t eat or do anything. But then, some of my medical reports started coming good. I was about to be released. So, then I told her: “Grandma, we had the same situation, we both felt depressed, that is why my reports weren’t coming good. Then I made her understood. It seemed like she was listening to me. She was also staying cheerful like me, eating food. Since all of us patients were staying together like a family, so if one person was told, others also listened and followed. So, their conditions improved too.” (CPF02, cured MDR-TB patient, female)
Patients and carers described patients chatting, singing songs and supporting each other, as explained by this wife caring for her husband:
“Sometimes we see that one [patient] is singing and another joins in with another song in the middle. Then laughter breaks out among them. That helps them to feel relaxed and happy.” (CGFP02, Care-giver, mother of MDR-TB patient)
For those with limited support from relatives and friends outside the hospital this was particularly important, as one cured patient recalls:
“I had good relations with the other patients. Since I was away from my own family, they were like family to me.” (CPF01, Cured MDR-TB patient, female)
The close connections established between patients meant that seeing each other’s suffering and even death, was particularly affecting, as this cured patient remembers:
“Many have died in front of my eyes in the ward. I used to see many people die from the ward beside ours. By seeing these people, I have known… I felt more broken mentally.” (CPM02, Cured MDR-TB patient, male)
Institutional
The interviews with doctors and nurses showed that while they recognised that many patients would be depressed throughout their stay in hospital, only a very small minority would require treatment for depression:
“It is difficult to say this overall, but about 1% or 2% of the patients may need treatment for depression. The patient generally stays more or less depressed through the entire period of the treatment starting from when the patient was first diagnosed with MDR-TB.” (DR01, Hospital doctor, male)
Given that 33.8% of patients were found to be depressed on the SCID assessment tool, the assumption that only 1-2% of patients required treatment is a significant underestimation. This is reflected in the responses from patients, who frequently expressed the view that health professionals were not providing any support beyond the delivery of the MDR-TB treatment:
“If they came to us and spoke to us about our updates that would help. But they seldom come for that purpose. They visit only to administer medicine and injection., they never visit us to ask us about our health, whether we are feeling better or worse.” (TBPM01, MDR-TB patient, male)
Several patients went further in their criticisms of staff, including the cleaning staff.
“Even the doctors and nurses, even the cleaning staff hate us very much. Today, when we were going for sputum-specimen, the staff were also walking along [near us]. They yelled, “Hey, why don’t you walk through on the other side?” … “MDR patients are barbarians, they do not understand that their disease spreads.” … The staff hate us; so why do they come to work in this hospital? They know that there are patients here, and they say heartless words in front of us; don’t they understand we feel bad?” (TBPF02, MDR-TB patient, female)
The researchers’ observations noted the reluctance of cleaning staff to clean the female bathrooms, feeling that this should be done by the women themselves. The male bathrooms were observed to be cleaner, whether this was due to the cleaning staff or the patients’ female care-givers, the researchers were unsure.
The lack of any means of keeping occupied was a challenge for patients and seemed to fuel their low mood.
“We have nothing here. One day I was singing, using these bowls as musical instruments, “Bondi achi bokkhobidhi hashpatal e”. I wrote that song, but when the security guard heard it he came and attacked me. He asked me “Why are you singing?” I replied, “Sir I don’t feel good that’s why I am singing.” Then he said “No, you are not allowed to sing here. I will file a complaint against you and will take you from here.” All of us stay here like this for the whole day and night. We are like unemployed people with nothing to do. Our mood keeps swinging with the passing of time.” (TBPM03, MDR-TB patient, male)
Interviews with doctors and nurses, coupled with the observations of the researchers pointed to a lack of infection control procedures and staff mentioned that one nurse was recently infected with MDR-TB.
At the time of the study, the hospital was beginning to phase in the new nine-month treatment regimen. Policy makers and clinicians were hopeful that this regimen would reduce the suffering and wider impacts on patient’s livelihood and depression.