Multi Drug Resistant Tuberculosis : behavioural aspects behind increasing Drug Resistant cases in the Eastern Cape

Tuberculosis (TB) remains an infectious but curable disease. In South Africa, TB treatment is free of charge at a primary health care (PHC) level. However, many patients do not complete their treatment regimen and develop Multi Drug Resistant (MDR)-TB which is very expensive to treat and can be fatal. It is therefore important to understand how MDR-TB patients perceive this disease and why some patients interrupt their treatment (1). The Eastern Cape (EC) Province is home to some of the most poor and vulnerable communities in South Africa, many of which exist in extremely rural and remote areas. Access to basic services in these areas is limited, making provision of health care difficult. TB remains a major health problem in South Africa especially in the Eastern Cape. The cure rate of 65% remains well below the 85% rate recommended by the WHO. At 41%, the Eastern Cape’s cure rate lags further behind the national average. Non-adherence is a complex, dynamic phenomenon with a wide range of interacting factors impacting treatment taking behaviour. It poses a significant threat to both the individual patient and public health and is associated with higher transmission rates, morbidity, and costs of TB control programs. Furthermore, it leads to persistence and resurgence of TB and is regarded as a major cause of relapse and drug resistance (2).

The Red Cross MDR-TB project is located in the EC Province and implemented in Port Elizabeth, East London and Uitenhage respectively. The project aims to alleviate the increase of DR-TB cases in collaboration with the Eastern Cape Department of Health (ECDoH) provincial TB control programme by providing directly observed treatment strategy (DOTS), by providing patients with incentives such as food parcels and hygiene kits, and by assisting clinics with MDR-TB case findings and tracing of patients that have defaulted on their DR-TB treatment. On a weekly basis support groups are held to create a forum where patients can talk about their fears and their journey with MDR-TB as well as for those who have been cured to encourage others to adhere to their treatment and bear witness that MDR-TB is curable.

The daily visitations of care givers to patients’ homes and health campaigns conducted in various communities have identified individuals’ negative behavioural attitudes towards DR-TB. These negative attitudes may result in community members’ poor treatment seeking behaviour and defaulting on their DR-TB treatment due to stigma and discrimination. “Some refuse for us to give them our support and render DOT as they fear that their neighbours would discriminate against them,” says Lindeka Nkumanda, the Uitenhage project facilitator.

Causes of such discrimination include the fear of transmitting the disease to friends and family, avoiding gossip, fear of perceived links between DR-TB and poverty; perceived links between MDR-TB and HIV/AIDS, and perceptions that being infected with DR-TB is a divine punishment.

The project runs door-to-door campaigns trying to spread awareness in vulnerable communities and at present has intercepted primary schools to educate and screen school children for TB. “It is scary when a child confuses how one gets infected with TB with that of HIV infection, that is why education is very important at an early age,” says Marcia Nqgandu, a project care giver.

“School children would verbalise that they see their parents coughing and getting sick, but would be told that they were being punished for something they had done. They are aware of the signs and symptoms, but would not know what disease it is or in fact if it is any disease.” says Nqgandu. “When people hear that you have MDR-TB, they assume that you are HIV positive as well and alienate you. Whether HIV positive or MDR-TB positive, we are still human beings and the care and support of family members and friends is what gets us through. If the community can understand this and be informed about the disease, especially by those who have once been infected, then I think the numbers of people infected with TB would decrease.” says Kholekile Myataza a Red Cross registered MDR-TB patient currently on treatment.

Being able to identify and address preventable risk factors for non-adherence is a critical task in the early stages of DR-TB standardized treatment expansion, otherwise poor compliance may result in ineffective treatment and community spread of DR-TB. “It was through the constant support and education of the Red Cross MDR-TB care giver that was allocated to me, that I am able to find my TB journey manageable. She did not only help me, but also my family members, to understand what MDR-TB was, how it is spread and how to control the infection,” says Myataza.

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