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Community-Based TB Management through Local NGOs

Community-Based TB Management through Local NGOs
Publication date: 
Apr 2019


The United States Agency for International Development (USAID) funds the Tuberculosis South Africa Programme, a five-year project (2016–2021) that provides technical assistance to the government of South Africa to reduce TB infections. A key component of the project includes supporting community-based non-governmental organisations (NGOs) to increase demand for and availability of TB and drug-resistant TB (DR-TB) services, working in partnership with key stakeholders at national, provincial and district levels.

Package of support and geographical coverage

The package of services provided by these local NGOs includes to:

  • identify presumptive TB cases through active case-finding and referring patients to health facilities for TB
  • screening, diagnosis and treatment
  • trace TB patients who are lost to follow-up and undertake household TB contact screening
  • offer support to communities and help TB patients stay on treatment through provision of home- based individualised treatment support, and injections for DR-TB patients receiving treatment via decentralised sites and primary healthcare facilities
  • help reduce stigma and encourage people to seek TB testing and treatment services early
  • support the strengthening of local advocacy, communication and social mobilisation activities around TB
  • and HIV, and the consolidation of services for people co-infected with TB and HIV
  • contribute to increasing involvement of key populations most at risk of TB, such as farm workers, pregnant women, children, and migrants including other mobile populations who are often left out of traditional TB control programmes.

The USAID TB South Africa Project currently funds 21 community-based NGOs in eight provinces of South Africa. These NGOs provide support to patients in 15 districts, eight of which are high TB burden districts. Collectively, funded NGOs supported a total of 2,378 drug-susceptible TB (DS-TB) patients and 768 drug-resistant TB (DR-TB) patients between August 2016 and July 2017. In the Eastern Cape and Western Cape provinces, NGOs also support interventions to improve the care and treatment of vulnerable populations such as farm workers who are disproportionately affected by TB.

Collectively, the 21 NGOs support a total 3,572 patients as of July 2017.The majority of supported patients are in the Eastern Cape (23%), Mpumalanga (19%), Kwa-Zulu Natal (14%) and the Free State (12%).

Contribution of local NGOs towards finding missing TB cases

Since August 2016, funded NGOs have conducted door-to-door and community awareness campaigns and have also facilitated community dialogues that resulted in 280 people diagnosed with TB and linked to care.

Additionally, during the same time period, contact management was done for 4,736 index patients, resulting in 205 additional people diagnosed and linked to care. A total of 485 TB patients were thus diagnosed with TB and linked to care through support provided by the NGOs.

These  results  show  the  important  role played  by  local community-based NGOs in contributing to the broader national goals of finding missing TB patients in South Africa and linking them to care. This is to avoid further TB transmission, particularly at community and household levels.

Caring for the community - a success story

Mosamaria is an NGO supported by USAIDTB SouthAfrica Project that aims to impact the health of community members of Mangaung District, Free State Province. As part of its work, the NGO conducts home visits.

During a home visit, NGO staff discovered a very sick woman living with her two young children in a one- room shack without electricity or sanitation.The woman had been coughing for a while, with other symptoms of TB. The community healthcare worker (CCG) employed by Mosamaria took a sample of the woman’s sputum, and checked the children for symptoms of TB. When the woman’s test results returned positive for TB, CCGs helped her and the children to visit the clinic for assessments, and to receive medication as appropriate. At the clinic, the mother was diagnosed with active TB and HIV, and her young daughter’s HIV positive status was also confirmed and communicated. The child was immediately started on Isoniazid Preventive Therapy (IPT) as well as Antiretroviral Therapy (ART).

The woman was initiated on TB treatment, with two Mosamaria CCGs providing directly observed treatment (DOT) support to her and daughter. On a daily basis, they are visited by the CCGs to ensure that they take their medication as prescribed, to observe any side effects, and monitor their general well-being. During these visits, the CCGs also noticed that the family needed blankets and food. They negotiated with the ward councilor to provide the needed supplies and assistance. Since then, the councilor has provided the family with food parcels and blankets, and helped them to apply for a social grant.

As a result of funding provided by USAID TB South Africa Project, Mosamaria was able to change this family’s life for the better by taking care of some of their important basic and health needs.

TB patients reflect on the care they receive

The NGO Care Ministry, operating in Nelson Mandela Bay Metro, Eastern Cape Province, currently supports 228 patients receiving treatment for DR-TB. Following a USAID TB South Africa Project geo-mapping exercise, which managed to trace 66 Extremely Drug-Resistant Tuberculosis (XDR-TB) patients to their homes, CCGs of the NGO started visiting these patients on a daily basis. During initial visits the care workers enquired about and spoke to those patients who were reported to have been in close contact with TB patients. This was done with the aim of determining if they had any symptoms of TB: night sweats, fever, unexplained and unwanted weight-loss and coughing for more than two weeks. This contact management approach resulted in 149 contacts of XDR-TB patients being tested, of which 22 were diagnosed with TB, further highlighting the prevalence of community-based transmission of TB. To address the high level of transmission, daily visits to patients also include health education that focuses on checks for infection prevention and control measures, such as opening windows, using the correct cough etiquette and wearing masks. Managing patients on a daily basis not only includes observing treatment and side-effects thereof, but also counselling patients about what to expect, and how to deal with issues, such as stigma and discrimination, that may affect TB patient’s ability to adhere to treatment.

When asked about their experiences of having TB, some patients said they felt shocked when told that not only were they infected with TB, but that they had the more serious XDR-TB, which meant that treatment journey, would be up to 18 months, longer than for DS-TB. These patients also mentioned that they were hospitalised for a few months at a decentralized health facility, which was a daunting experience for some, as they were away from home for longer periods. Seeing fellow patients dying from TB was also reportedly difficult to process and deal with. On returning home, most patients reported experiencing discrimination from community members, some of whom actively avoided them due to fear of being infected with TB. This was notwithstanding the fact that patients on treatment for XDR-TB are not infectious a short while after they are initiated on treatment.

Reflecting on the daily care they received, the majority of patients were full of praise for the support provided by care workers supported by USAID TB South Africa Project. They indicated that it was very encouraging to have someone motivating them to continue treatment, especially if that person was empathetic, and understood what they were going through. An advantage of home visits cited was that parents without childcare or those struggling to pay transport fares could receive their much-needed treatment and health education without having to travel to clinics regularly. Patients also appreciated being reminded of the importance of maintaining a healthy lifestyle and taking responsibility for their own health.

These patients look forward to completing their treatment and want to be involved in educating others in their communities about TB. This is to reduce the risk of onward transmission, and to help minimise the stigma that so many of them are enduring.