African TB patients in London often have misconceptions about their illness and feel stigmatised

African patients with tuberculosis (TB) in London often have misconceptions about the illness, failed to recognise symptoms of the infection, and felt stigmatised following their diagnosis, particularly because of TB’s association with HIV, according to a qualitative study published in the International Journal of Tuberculosis and Lung Disease. The investigators suggest that efforts should be made to improve knowledge of tuberculosis amongst migrants and that individuals with TB should receive counselling about the illness and its association with HIV.

There has been an increase in the incidence of TB in the UK in recent years, with new cases of the infection disproportionately affecting individuals from Africa amongst whom the incidence of the infection is 283 cases per 100,000 compared to only five cases per 100,000 in the white population. Along with PCP pneumonia, TB is the most common AIDS-defining illness seen in the UK, and all adults diagnosed with TB in the UK are recommended to have an HIV test.

Both TB and HIV are stigmatised illness and there is concern that individuals with symptoms of TB delay coming forward for treatment and care because of they fear an HIV diagnosis. Investigators at the Homerton Hospital in Hackney, east London conducted in-depth interviews with 16 African-born patients attending the hospital’s TB clinic, about their understanding of the disease, their presentation medical care, their reaction to a TB diagnosis, adherence to their anti-TB therapy, and their experiences of stigma.

The patients were aged between 19 and 46 years and came from countries across Africa. There were widespread misconceptions about the origins and transmission routes of TB. Some patients believed that the infection was hereditary, or was the result of poisoning, or was even a form of pneumonia. One patient believed that the infection could be transmitted through social contact, telling the investigators, “we used the same utensils, shared the same toilet, bathroom, cups and glasses. And we weren’t using disinfectants.” Another patient believed that TB was a sexually transmitted infection, commenting, “I thought…he passed it onto me through sex, like HIV.”

Many patients failed to recognise the symptoms of TB, attributing them to flu, food poisoning, boils or strenuous physical activity. One patient told the investigators, “I thought it was because of the heavy load I carried. I did not report the chest pain for about three weeks. When I coughed and saw blood, then I came to the doctor.

But even when patients presented to their doctors, healthcare workers sometimes failed to consider TB, with one individual reporting, “I started coughing in November and it wasn’t until mid-January that I was referred to hospital for chest X-ray.”

A significant proportion of patients, nine of the 16, did not really believe that they had TB. One patient told the investigators, “I am not convinced it is TB I have. First, they say it is this illness [sarcoidosis], then they say it is TB.” But the researchers did find that individuals who had experience of TB reacted differently to their diagnosis, with one man saying TB “was no problem because we know it. My cousin, everyone, they have TB before. So when I told them, ‘look I have TB’, they say ‘no problem.’”

Despite high levels of denial, excellent adherence to TB treatment was reported, with many individuals saying that a TB nurse had been helpful. Nevertheless, high pill burden and side-effects were mentioned as barriers to adherence.

Stigma was experienced in a number of contexts. One patient resented being placed in isolation following the diagnosis of his TB, telling the investigators, “I felt bad. I mean I am not an alien. You see all these nurses masked up. It wasn’t a good feeling.” Others experienced stigma due to ignorance from friends and social contacts about TB, whereas others restricted their social circles and socialisation to avoid the possibility of stigma.

TB’s association with HIV contributed to the stigma that the patients reported. One patient said, “it’s always like, ‘He’s got TB; he must be HIV-positive.’” Another patient resented a suggestion from his healthcare team that she should have an HIV test because she had TB, commenting, “you could tell from the way he was asking the questions that he was suspecting that I had AIDS. I wasn’t happy at all.” Indeed, most individuals offered an HIV test declined because they were worried about the result and the possibility of stigmatisation as a result.

The investigators recommend that TB patients should receive counselling prior to HIV testing, taking into account their misconceptions and fears of stigma.