Working with communities in Indonesia to reduce TB-related stigma

The challenge

Indonesia, a lower-middle-income country in South East Asia, contributes approximately one in 11 of the world’s TB cases, with nearly one million people falling ill and over 150,000 dying due to TB each year.

TB-CAPS is a mixed methods study to implement a peer-led, community-based psychosocial support package for people affected by tuberculosis stigma in Indonesia. The study, funded by a Medical Research Council Public Health Intervention Development (PHIND) award, is co-led by LSTM’s Tom Wingfield and Universitas Indonesia’s Ahmad Fuady.

The UN and WHO recognise TB-related stigma as a social determinant of health and a barrier to early TB diagnosis and treatment. Despite this, there is limited practical guidance on measurement or mitigation of stigma, which makes developing evidence-based tools and interventions that are socio-culturally appropriate and tailored to diverse needs of local communities difficult.

The project 

TB-CAPS follows on from the findings of the CAPITA Study, which was funded by a Royal Society of Tropical Medicine and Hygiene Early Career Researcher grant to Dr Fuady in collaboration with Dr Wingfield. During CAPITA, the team completed a scoping review and developed a novel conceptual framework on the pathways to impact of stigma-reduction interventions.

The team went on to develop and validate a locally-appropriate tool to measure TB-related stigma in Indonesia, including in workplaces. The tool measures two key forms of TB-stigma: self-stigma, which includes feelings of guilt, shame, and reduced self-worth experienced by people with tuberculosis and anticipated stigma, which includes perceived prejudice or discrimination from the community, related to having TB. Both forms of TB-stigma can prevent people from seeking care, getting a prompt diagnosis, and becoming cured of TB.

Using the socio-culturally adapted stigma measurement tool developed in the CAPITA study, the team found that many people with TB experienced self-stigma in Indonesia and that higher levels correlated with depression and decreased quality of life. The team also identified that people with TB had an unmet need for psychosocial support from peers affected by or who have survived TB, through group counselling or mutual support to help them navigate TB-related stigma and treatment.

TB-CAPS builds on these findings to work with TB Civil Society Organisations in Indonesia, such as the national TB survivor group TB-POP and the Indonesian National TB Programme, to co-develop a peer-led community-based intervention to address the psychosocial impact of TB.

Aims and objectives

The TB-CAPS team will support the training, development, and implementation of evidence-based peer support groups, sometimes called TB Clubs, which have been shown to be acceptable and impactful in other settings including Peru and Nepal. The groups are led by TB survivors and further strengthen local, regional, and national networks of people affected by TB. Grass-roots networks are important because they empower people affected by TB, reduce isolation and stigma, create a connected and supportive community, and can complement existing related health system activities and services.

TB-CAPS is suuported by a UK Research and Innovation MRC PHIND grant (MR/Y503216/1).

For more information contact: Tom Wingfield or  Ahmad Fuady