This month Chrispin Siang’ombwa reports from the 3rd Stop TB Partners’ Forum in Rio de Janeiro, Brazil on the issue of TB-related stigma. He explains how an Alliance toolkit aims to help counter this problem. Chrispin is a member of CITAM+, a patients-led organisation that provides support and solidarity for tuberculosis and HIV co-infected patients in Zambia.
Fighting TB Stigma Using a Community-based Approach
By Chrispin Siang’ombwa.
For over a hundred years, Tuberculosis (TB) has been regarded as a disease of the poor and those with excessive social behavior especially migrant workers and miners. Back then, a TB diagnosis was often accompanied by death.
TB is an infectious and contagious disease that can be spread through the air, which until the 1940s had no cure. Even though nowadays TB is a preventable and curable disease, TB patients and their families throughout the world continue to face stigma and discrimination. This is even worse in countries facing the dual epidemics of TB and HIV.
It is against this background that the International HIV/AIDS Alliance and ZAMBART Project unveiled the TB Anti-stigma Toolkit at the 3rd Stop TB Partners’ Forum held in Rio de Janeiro, Brazil on March 23-25, 2009.
According to Steve Belemu, a lead trainer for the ZAMBART Project, the toolkit is a participatory and interactive resource that seeks to involve the community, health workers, volunteers or any other person who is interested in fighting TB stigma.
Pictures and songs are used in order for the participants to be able to identify the form of stigma through an exercise that is called ‘naming the form of stigma.’ This helps people to understand the form of stigma especially those who can’t read mostly from rural based communities.
Belemu said the toolkit was developed following the realization that there are still fears about TB transmission and that TB stigma within health facilities in Zambia and other parts of the world is still rampant.
“There are misconceptions about the relationship between TB and HIV in Zambia and around the world. It’s treatable and curable and people should be mindful of that fact,” Belemu said.
Belemu called on individuals, families and communities to challenge TB stigma in different contexts and provide support to TB patients and their families.
The toolkit has 19 exercises that include identifying forms, effects and causes of TB stigma; basic facts on TB transmission; stigma in health services and at home; the links between TB and HIV stigma; the war of silence towards children with TB; and TB and human rights.
“The toolkit took 18 months to pilot the new exercises through training community facilitators in 19 communities across 6 provinces of Zambia to use the exercises with different audiences,” a regional trainer with the International HIV/AIDS Alliance in Zambia, Mutale Chota said.
It was written for and by TB and HIV trainers in Africa. The toolkit was designed to help trainers plan and organize educational sessions with community leaders or support groups to raise awareness and promote practical action to challenge TB and HIV stigma and discrimination.
“The module is targeted at countries with high TB/HIV co-infection and to a wider range of audiences within communities including TB patients and their family members, community leaders, TB programme volunteers and TB health workers,” Chota said.
It is recommended to use the module with a mixed audience, for example TB patients and health workers, in order to promote dialogue and mutual understanding.
“The module can be used either in relation to TB issues only or within HIV anti-stigma strategies as an extra topic,” Belemu explained.
As a person who has formerly suffered from TB, I feel that sections on human rights found in the toolkit are vital. My fellow TB activists will agree with me that most of TB patients’ rights are being violated more especially in the hospital setting. For example, a TB patient will take the sputum to the clinic but the health worker will disregard the patient and simply tell him/her to put their sputum in a container that looks like a dust bin and tell them to leave without being attended to. I have witnessed cases where a health worker would shout at the patient telling him/her to go for an HIV test. Examples of TB related stigma within the health setting are endless.
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