Feasibility, acceptability, and scalability of a community-based, peer-led psychosocial support intervention for people with TB in Indonesia: a qualitative study from the TB-CAPS project

In Indonesia, tuberculosis remains a stubborn and deadly presence, ranking the nation second in the world for the number of new cases each year. While the medical treatment for the disease is well understood, the journey to recovery is often blocked by something less tangible but equally powerful: the fear of being shunned. When a person is diagnosed with tuberculosis, they often face a heavy burden of shame, whispered rumors, and isolation from neighbors and even family members. This social stigma acts as a barrier, causing people to hide their illness, delay seeking help, or stop taking their medicine before they are cured. Beyond the physical symptoms, the disease brings a deep sense of hopelessness and depression, creating a cycle where the fear of the disease makes the disease harder to fight. To break this cycle, health experts have long known that treating the infection is not enough; the emotional and social wounds must also be healed.

A recent study from Indonesia explores a specific way to address these hidden wounds. Researchers tested a community-based program where people who had already survived tuberculosis became the helpers. These survivors, known as peer supporters, were trained to lead group conversations and offer one-on-one guidance to those currently fighting the disease. The goal was to see if this approach, which relies on shared experience rather than just medical instruction, could make the treatment process easier and more successful. The study, conducted in two cities, listened closely to the stories of patients, the survivors who helped them, and the local health officials to understand if such a program could work on a large scale in the future.

The researchers gathered fifty people for their investigation, including patients currently undergoing treatment, the peer supporters who had led the groups, and officials from local health districts. They held group discussions and private interviews to ask simple but vital questions: Did this program help? Did people feel comfortable joining? Could it continue without outside help? The answer that emerged was a resounding yes regarding the human impact. The program worked because it filled a gap that standard medical care often leaves open. In a typical clinic visit, a doctor or nurse might have only a few minutes to explain how to take pills and warn about side effects. In the peer-led groups, however, participants had dedicated time to ask questions they were too afraid to ask a doctor. They learned practical details about how the disease spreads, how to live safely with family, and how to manage the side effects of medication. This flow of clear, honest information helped dissolve the myths that fuel shame. One patient, who had once felt so desperate they considered ending their life, described how hearing from others who had survived the same struggle gave them the will to live and the desire to recover for their children.

The power of the program lay in the shared stories. When a survivor sat down with a new patient and spoke about their own journey through the darkest days of treatment, it did more than offer comfort; it offered proof that survival was possible. Patients reported that hearing these stories reduced their feelings of isolation and replaced hopelessness with motivation. They found a sense of belonging in a group where everyone understood the specific fears and challenges of tuberculosis. This environment allowed them to laugh again, to make jokes about their condition, and to feel stable in a way they had not before. The support was so effective that it changed the role of the patients themselves. Many who received help felt a new sense of responsibility and began to help others, sharing what they had learned with neighbors or new patients at the clinic. The program created a cycle where receiving support inspired people to give it, turning the patients into active agents of their own community's health.

However, the study also found that keeping this program running in the long term faces a significant hurdle: money. The success of the program relied heavily on covering the cost of transportation for patients and peer supporters to get to the meetings. Many patients in Indonesia struggle to afford the bus fare to reach a clinic for their daily medication, and without financial help, they often drop out of treatment entirely. The peer supporters, who gave their time freely, also needed help with travel costs to lead the groups. The researchers found that while everyone agreed the program was valuable, the local health offices did not have the budget to pay for these costs on their own. There was a sense of uncertainty about who should take the lead in organizing the program. Health officials felt they were too busy with their daily duties to manage it, while community groups felt they needed the health officials to take charge. No single group was willing to step forward as the leader, leaving the future of the program in a state of limbo.

The researchers concluded that while the peer-led support model is highly effective at reducing stigma and helping people finish their treatment, it cannot survive without a clear plan for funding and leadership. The study suggests that for this kind of support to become a permanent part of healthcare in Indonesia, the government and other organizations must find a way to pay for the transportation and operational costs. They also need to decide clearly who is in charge of coordinating the effort between hospitals, local communities, and health departments. Without this financial and organizational backbone, the program risks ending when the initial project funding runs out, leaving the patients without the vital emotional support they have come to rely on. The path forward is clear: the human element of the cure is working, but it needs a stable foundation to last.