The demographic information of the respondents is reported in Table 1. The narratives, interviews, and observations identified several factors that shape the lived experience of TB patients. These factors are socio-economic, structural and medication-related factors.
The TB patients live in a social environment characterized by stigma. Patients revealed experiencing stigma which affected the way they cope with treatment. The following two quotes from patients in Ngara (aged 36 years) and in Kibera (aged 30 years) bring out the reality of stigma.
“I lost close friends when they realized I had TB. …. I can say that the reason why they left me is because they did not want to be associated with sick people like me. However, I did not lose hope and I am hoping that I will heal so as to revive the relationships although I am not sure that they will accept me back.” (Patient-22, Female, 36 years, Ngara)
“People fall sick but with TB, this sickness is not normal. It is the worst experience because every time I walk in the estate, people start speaking in undertones while whispering. I feel uncomfortable because I know they say bad things about me yet I did not choose to be sick. I only get relief from my husband and children who understand me well.” (Patient-05, Female, 30 years, Kibera)
This is further reinforced by the sentiments of the healthcare providers. Consider the following quote.
“There is a lot of stigma attached to TB. In fact, one of the barriers to treatment and the reason why some patients may default is because of stigma. People in the society do not want to be associated with TB patients because they think that they will get infected. People need to be educated about TB to reduce stigma and include the patients in the society.”(P01-Clinical Officer, Female, Mbagathi Hospital)
The above excerpts from patients’ narratives indicate that their interactions are riddled with stigma. These negative experiences are not perpetuated by friends and community alone. The family, like the community, also perpetuates stigma. Their actions against the patients are suggestive of the underlying feeling of fear, shame, or dishonor. Consider the following two quotes from a patient and another from a healthcare provider.
“When my mother brought me to the hospital and doctors came with positive TB diagnosis, she bought cups, plates, and other utensils specifically for me. This was despite the fact that the doctor said the diagnosis was done early enough and my mother should not worry about risk of infection to others. That is when I felt that although she was trying to be careful, she regarded me as a threat already and feared my encounter with others.” (Patient-10, Female, 26 years, Ngumo)
“There is a 24-year-old boy who came here and we started him on TB treatment. When he went home, the boy was separated. He was told to start living alone in a different room for almost two weeks. When he came next he said that the family members are asking whether he can join them in the main room. So we wondered where he had been living and he said that they had separated him. This means there is still fear. He did not go on well. He even refused taking the drugs and we could not follow up on him anymore. He ran away from the family.” (P02-Nurse, Female, Mbagathi Hospital)
Fears and misconceptions on TB causes and transmission:
Certain beliefs and perceptions on TB were found to also shape the patients’ experience. These perceptions, knowledge, fears and stereotypes that form TB etiology perpetuate stigma. This was particularly evident in the connection between TB and HIV/AIDS. Although TB can occur independently of HIV, most people believe that it is caused by HIV/AIDS. It was found out that TB patients were perceived to have HIV/AIDS and were thus seen within the lenses of HIV carriers and with the capacity to not only infect others with TB but potentially also with HIV. The following is an excerpt from a key informant interview on the issue of TB and HIV/AIDS.
“Most think that if one has TB, he/she has HIV, but which is true mostly because 60% of TB patients have HIV. But usually when the patients get TB they think they have HIV. They are scared because of the stigma.” (P01-Clinical Officer, Female, Mbagathi Hospital).
The narratives from the patients showed that the perceived link between HIV/AIDS and TB shapes people’s attitudes towards TB patients.
“People say that TB does not come alone; it comes with HIV/AIDS. Thus, when you see people avoiding you when they know you have TB, they suspect you have HIV/AIDS. It makes you feel labeled and bad especially when you know that you do not have AIDS. Even if you have HIV/AIDS, it is a disease like any other and people should not discriminate against you because of that.” (Patient-02, Male, 40 years, South-C)
The reality of the TB-HIV/AIDS co-infection is demonstrated by instances when patients not only fail to disclose their TB status for fear of losing friends but also when reality comes out, they actually lose intimate partners because of fear of infection. This is captured by Patient 11, a male of 28 years attending clinic at the Mbagathi Hospital.
“I had a female partner when I was working in town. One day, she saw me take TB drugs and I confessed that I had TB. I had not told her before that I had TB since I feared that she would leave me. She told me that TB is normal. After some time, she left me for another man. When I asked her friend why she left me, I was shocked by the response. Apparently, she thought I had HIV when she learnt about my TB status.” (Patient-11, Male, 28 years, Mbagathi Hospital)
Apart from HIV/AIDS connection, TB stigma is also embedded within the perceptions regarding its supernatural cause.
“Some say that it is Chira (curse) and believe that they have to contend with this …. Others say that it is inherited; that TB runs in the family. So they think that it is genetic. Others think that it is a myth. So some of them go to witchdoctors because they believe they have been bewitched. Some of those we put on treatment say that TB is about sorcery so they must go home to see a sorcerer.” (P01-Clinical officer, Female, Mbagathi Hospital)
TB patients are isolated because TB is thought to be a result of transgression leading to a curse. Patients are thought to have sinned and, therefore, subjected to isolation that fuels stigma. Other beliefs and stereotypes that people have in relation to TB add weight to TB patients’ experience as illustrated by the statement of one female patient.
“People in the estate say that I will not bear children anymore because I have TB. Although I know this is not true, it is a negative statement especially when you hear people say it in your presence.” (Patient-32, Female, 31 years, Ngara Health Centre)
Thus, people’s beliefs and perceptions on the cause of TB and its consequences influence the TB experience since some patients are labeled and isolated.
Weak social and family support
TB patients tend to have weak social and family support, partly attributable to the impact of stigma. The excerpt below illustrates the experience of declining social and family support.
“I live alone. My wife ran away and I depend on my uncle since I cannot resume work because of sickness. My uncle does not give me money to buy food and does not support me. He does not care about me at all. When I borrow money from other people, they say that I am a bother so I just decide to stay with my hunger.” (Patient-16, Male, 46 years, Kibera)
The impact of perceptions and stigma also contribute to weak family and social support. Due to stigma, patients get isolated without being supported. The case of the 24-year old boy cited above reveals weak family support. Similarly, patients face declining social support due to perceptions as exemplified below.
“… when the [TB] results came positive, people started saying that it was a curse from my grandfather because I refused to name my baby after him. Others started saying that my enemies had bewitched me and they avoided me. This really scared me since in our culture, people do not associate with the cursed and the bewitched lest they fall in the same [misfortune]. However, the doctor told me not to worry about it….” (Patient-05, Female, 30 years, Kibera)
Although TB services are free in public health facilities, patients cited financial constraints in meeting the demands of treatment. For example, accessing the health facilities made patients incur transport costs and the prescribed drugs require them to have sufficient food before taking the drugs as shown in the following quote.
“After talking to me… the doctor advises me to eat well because the drugs cannot be taken with an empty stomach. When you take the drugs before eating, you feel dizziness and you cannot work.” (Patient-11, Male, 41 years, Dagoretti)
Most of the patients interviewed were either unemployed or engaged in businesses with low income. As such they are faced with financial challenges making it difficult to get essentials such as food. At times, patients have to weigh between eating as instructed by the health care provider or letting the children eat first when there is food scarcity. Consider the following quotes:
“Sometimes it is hard to eat well because, as you know, good food requires money. So I am unable to eat according to the doctor’s advice and I think that is why I experience headaches. When I do not have enough food, I do not take the drugs to avoid more headaches.” (Patient-07, Male, 26 years, Mbagathi Hospital)
“I have two children who need to eat but the doctors tell me to eat well too. I spend the little money I have on food and when there is no money to buy enough food, I let the children eat first…. I postpone taking the drugs until when I get enough food. You may collapse if you are hungry and take the drugs like that [when hungry].” (Patient-32, Female, 31 years, Ngara Health Centre)
“…when my husband died in 2005, I was left with no stable means of income. I had six children to take care of but two died along the way. Feeding myself and the remaining ones became a problem because I was also falling sick from time to time. I opened a kiosk to sell mandazi [buns]. This is the business that has sustained me with little income although I do not make sales when I am sick. When I was very sick last December, I went to the hospital and they told me I had TB and put me on treatment. I still rely on the small business and well-wishers for food and other necessities.” (Patient-06, Female, 46 years, Kibera)
The direct observations also showed that most of the patients lived in Nairobi’s sprawling informal settlements. Out of the 40 patients interviewed and followed at their homes, 29 lived in informal settlements within Nairobi. These areas are densely populated and housing is in bad condition and poorly ventilated, posing the risk of spread of TB including re-infection especially in the event of defaulting. The possibilities of infecting others are even more pronounced given that the average number of people living with the patient in the same room/housing was five (range = 1 to 9 members). This perpetuates the cycle of disease burden.
Interaction with healthcare providers
The relationship between the TB healthcare providers and patients positively shaped the experience as patients reported having good and fulfilling interaction with the care givers. When asked about the experience in the consultation rooms, patients responded that there is warm reception in each visit and healthcare providers are mindful of patients’ needs and welfare. The patients cited creating good rapport with the healthcare providers. The latter also listen, care and support the patients emotionally through encouraging and advising them accordingly. These views are captured by the patients below:
“The health care providers here are good people who treat us like their own people and they seem to understand my culture well. In addition, I get TB drugs every time without being turned back.” (Patient-31, Female, 28 years, Ngara Health Centre)
“They [healthcare providers] are very understanding people here…Most of them are my friends now.” (Patient-34, Male, 32 years, Huruma)
The patients are also happy with the friendliness and confidentiality demonstrated by the health care providers as exemplified by this female patient.
“The doctor answered all the questions I had and was very pleased with her friendliness. She knows how to keep secrets.” (Patient-06, Female, 46 years, Kibera)
These apparent good relationships with healthcare providers also extended to the community healthcare workers (CHWs). The community healthcare workers visited the sick in their own home and encouraged them to take their drugs as prescribed.
“There is one [CHW] who visits me at home. She is concerned about me and encourages me to take the drugs even when I feel like giving up. I do not let her down.” (Patient-39, Female, 28 years, MlangoKubwa)
“My sister [the CHW] here even calls me sometimes to know how I am doing. Yeye ni kama daraja yangu na hospitali [She is the bridge between me and the hospital].” (Patient-13, Female, 30 years, Highrise)
The healthcare providers cited passion for caring for the patients and showing empathy.
“You look at patients and you cannot afford to be rude. We also have to follow the ethical code of conduct and respect the patient.” (P03-Clinical Officer, Male, Ngara Health Centre)
“Some of them [patients] have come here many times and we even know their names. One way to help them is to show them love and care and that is what we do. They can lose hope if not supported well.” (P02-Nurse, Female, Mbagathi Hospital)
Despite the good relationship with healthcare providers, patients cited delays in service provision. Findings indicate that patients make long queues and wait for a long time before being attended to, which distorts their work schedules substantially. This is exemplified in the quotes below.
“It becomes tricky when I have to go to the hospital to pick the drugs and I have to report to work at the same time. When I come to pick the drugs, I get late at work but my boss understands.” (Patient-27, Female, 30 years, Eastleigh)
“… like today, I came here at 7.30am. Look it is now 11.30am and they [healthcare providers] have gone for a break. You feel like going away without the drugs since you have other things to do.” (Patient-09, Male, 36 years, Mbagathi Hospital)
One key informant confirmed these sentiments.
“We also get overwhelmed. We are few and there are many patients to be attended to.” (P04-Nurse, Ngara Heath Centre)
Delays in service provision are compounded by inconveniences that patients may go through when certain health facilities have to make referrals.
“Some facilities lack enough TB drugs and therefore refer some patients here [Mbagathi] and some may not even bother to come because of the inconvenience.” (P02-Nurse, Mbagathi Hospital)
“I can go to get drugs or other services in other facilities close to my place but I come here [Mbagathi] directly because those other facilities may not give me what I want.” (Patient-01, Female, 31 years, Mbagathi Hospital)
TB treatment is challenging for the patients, as they have to contend with various undesirable treatment effects. The treatment is for a period of 6 months and patients find it difficult to adjust to daily intake of TB drugs. The patients reported challenges such as high pill burden, long duration regimen, and the side effects of the drugs. Patients feel burdened by the drugs as attested by the following quote from a healthcare provider.
“TB treatment takes a long duration, you find them defaulting, it is like they have lost hope. So they need to be counseled for them to take the medicine for the needed duration. Patients also feel burdened. TB drugs are like five drugs in one but the government has tried to put them in a fixed dose combination.” (P01-Clinical Officer, Mbagathi Hospital)
The healthcare providers’ views are given credence by the patients’ narratives. They cited the cumbersome nature of taking the TB drugs because of the long duration regimen.
“I was told that TB treatment takes six months, and I felt that it is a long time. Now I have gotten used to them although it is difficult because you have to carry the drugs when you are travelling.” (Patient-26, Male, 37 years, Ngara Area)
“For my case, to say the truth, I take the drugs because the doctors and people who observe me insist. If I were let alone, I would quit because the drugs can really burden you.” (Patient-29, Male, 21 years, Ngara Health Centre)
Alongside the long duration regimen and the high drug pill, patients also face the challenge of the drugs’ side effects. One healthcare provider confirmed the issue of drug effects as demonstrated by the following quote.
“The side effects they can get include the skin cutaneous hypersensitivity (they start itching all over the body) because the drugs can cause this. They also get jaundice, abdominal cramps, peripheral neuropathy (affects the nerves especially when they lose vitamin B6), severe joint pains and patients are unable to walk. They can pass reddish urine. But we tell them that this is normal because when the drug is excreted, the color of the drugs comes out. But it really scares them.” (P01-Clinical Officer, Female, Mbagathi Hospital)
The side effects interrupt the patients’ normal lives and may lower the quality of daily life for the patients as well as affecting treatment adherence.
“They may have TB drugs, Septrin®, and antiretroviral drugs so they feel burdened. This may make them to default. They can even choose which drugs to take among those because they say that they feel more sick when they take certain drugs. So they may choose to take the ones that make them feel better. So the issue of side effects becomes major. The side effects are many. When they get the side effects, it becomes difficult to continue with medication.” (P03-Clinical Officer, Male, Ngara Health Centre)
“… I was about to quit taking the drugs because it was cumbersome to take the drugs each day. It becomes boring and sometimes disgusting especially when I experience unbearable headaches and dizziness.” (Patient-07, Male, 26 years, Mbagathi Hospital)