Harsh TB stigma killing patients— Kemri

 Although Kibet is not hospitalised and continues to take medication to treat tuberculosis, he feels lonely.

“I think I have lost the ability to fight this. I've been alone almost daily since I fell sick. I'm unlovable and cursed to be alone until I heal,” he says.

He fell sick with pulmonary tuberculosis in February this year, and started his medication in March.  

“People think I will infect them with TB. There is also word that I am dying with HIV,” says Kibet who is 33-years-old, has a long, gaunt frame. He weighs 58kgs but his health is slowly improving.  

Kibet is probably no longer infectious, having been on medication three months now.  Most people are no longer infectious and feel better after taking TB medicines for several weeks. He is also not HIV positive.

The stigma against TB patients is so harsh in Kenya, that researchers have now identified it as the main reason many patients default on medication.

“From the study findings, stigma was the main barrier to TB management. Negative societal beliefs about TB and HIV co-morbidities appear to contribute to TB stigmatisation in society,” says a new study by Kenya Medical Research Institute, Ministry of Health and Amref Health Africa.  

“Because of such beliefs, community members don’t always accept TB patients. This, coupled with self-stigmatisation, leads to reduced self-esteem among TB patients and explains why patients may not disclose their TB status due to shame or guilt, thus increasing the risk of transmission of TB in the community,” the authors said.

The authors were investigating the prevalence and impact of mental health issues in TB patients in Kenya.

Their study, which involved 127 TB patients and 30 healthcare workers (HCWs), revealed that 66 per cent of TB patients experience anxiety and 55 per cent suffer from depression, particularly during the presumptive stage of TB.  

They identified stigma as the biggest source of mental health problems for patients. 

One patient shared, "I avoided telling anyone about my TB because I was afraid they would think I also had HIV. It was easier to suffer in silence than to face the shame and isolation."  

The psychological toll of TB is compounded by the lack of mental health support integrated into TB care programmes. 

"Our healthcare workers are not adequately trained to handle the mental health issues that come with TB," the authors said.

This gap in training and resources often leads to missed signs of depression and anxiety, resulting in substandard patient care.  

One healthcare worker admitted, "We focus so much on the physical treatment of TB that we sometimes overlook the emotional and mental needs of our patients." 

Kenya reports at least 90,000 tuberculosis cases annually, and 18,000 deaths every year, according to the Ministry of Health. In 2022, the country reported 97,000 cases, according to the National TB Programme Annual Report, 2023.

Despite the challenges, the Kemri study also highlighted the positive impact of support structures on TB management. Patients reported that encouragement, reminders to take medication, accompaniment to clinics, and financial support were crucial in their treatment journey.

Kibet said support from his mother and a few healthcare providers is what keeps him going. “They reminded me that I am not alone," he said.

The study calls for the integration of mental health care into TB programmes, stressing that a holistic approach is essential for improving treatment outcomes.

"Healthcare systems should prioritise training healthcare workers to identify and manage mental health issues in TB patients," the researchers recommend. This includes providing psychosocial support packages and raising community awareness to reduce stigma.

The study is titled Mental health issues associated with the management of tuberculosis in Homa Bay, Busia and Kakamega counties, Kenya. It was published in April by the Plos One journal. 

The authors said addressing the dual stigma and mental health challenges faced by TB patients is not only vital for their well-being but also for controlling the spread of the disease.  

"Stigma and mental health issues are significant barriers to effective TB management," the study concludes. "By integrating mental health care into TB programmes and fostering supportive communities, we can improve the quality of life for TB patients and enhance treatment adherence."