“Make sure you involve us” – Youth experiences, care needs, and areas for intervention across the TB care journey in East Africa: a qualitative study

Tuberculosis is a major cause of morbidity and mortality for youth (ages 15–24) globally. While it can affect anyone, young people between the ages of fifteen and twenty-four face a unique set of hurdles when trying to get better. This age group is often in the middle of a turbulent life stage, balancing school, work, and the push toward independence, all while navigating a healthcare system that was not built for them. In many parts of the world, a diagnosis of tuberculosis carries a heavy social weight, often treated with fear and silence rather than medical care. When a young person falls ill, the path to recovery is rarely just about taking medicine; it is about overcoming the fear of being seen, the cost of travel, and the pressure to keep going even when feeling weak. Understanding how these young people experience their illness is essential, because without their specific needs being met, the disease continues to spread and linger, leaving behind lasting damage to their lungs and their futures.

Researchers in Kenya and Uganda recently set out to map this difficult journey, listening directly to the voices of young people who had survived tuberculosis and the healthcare workers who tried to help them. The study took place in two major hospital regions, one in western Kenya and another in southwestern Uganda, gathering stories from thirty-nine individuals. The team spoke with twenty-five healthcare workers, including nurses, doctors, and community health promoters, as well as fourteen young patients. These young people had a median age of twenty-two, and most were living in rural or semi-urban areas where resources are often scarce. The researchers conducted deep, private conversations to understand what happened from the moment a young person first felt sick, through the long months of treatment, and into the period after they were declared cured. They wanted to know not just what medical steps were taken, but how it felt to be a teenager or young adult trying to heal in a world that often misunderstands the disease.

The story that emerged was one of significant delay and struggle. Many young people did not realize they had tuberculosis until their illness had become severe. A common pattern involved a persistent cough that was mistaken for something less serious, like pneumonia or a simple cold. Because the symptoms were not immediately recognized as tuberculosis, or because the young person was afraid to admit they were sick, they waited months before seeking the right tests. In some cases, this delay happened while they were away at boarding school, far from the parents or guardians who might have noticed their decline. One young woman described how she coughed up blood before anyone realized the true cause, having spent months treating the wrong illness. Another young man recounted how he ignored the warning signs, telling himself that the disease was something that happened to other people, only to faint from the pain later. This hesitation was driven by a deep fear of what others would think if they knew, a fear that often kept them from the clinic until they were critically ill.

Once a diagnosis was made, the path to recovery remained fraught with obstacles. The treatment for tuberculosis requires taking several large pills every day for many months, a routine that is difficult to maintain when you are young and trying to fit in with your peers. The stigma surrounding the disease was a powerful barrier; many young people hid their medication, taking their pills in secret or skipping doses entirely to avoid being seen by friends or teachers. One young man explained that he would wait until everyone else was eating dinner before he could take his medicine in private, terrified that his classmates would shun him if they knew. This fear was not unfounded; participants described being treated as if they were cursed or dangerous, with doors closing and friends pulling away. The isolation was so profound that it led to severe mental distress, with some young people feeling so hopeless that they wished for death rather than to live with the shame of the illness.

Economic hardship made the situation even more precarious. Many of the young people interviewed were not working or were students with no income of their own, relying entirely on family members who were often struggling to make ends meet. The cost of traveling to the clinic, the need for nutritious food to take with the medicine, and the loss of time from school or work created a heavy burden. One young woman shared how her family could not afford the full hospital bill when she was admitted, leaving them with a debt that still hung over them. Another noted that at school, the food provided was often insufficient to counteract the side effects of the drugs, which left them feeling dizzy and weak. Without a steady hand to guide them, many young people stopped their treatment as soon as they started to feel better, not realizing that the bacteria were still active in their bodies. This led to recurrence, where the disease returned and required further treatment.

Despite these immense challenges, the study also revealed a clear path forward, one that relies on listening to the young people themselves. Both the patients and the healthcare workers agreed that the current system is too cold and impersonal for this age group. They described clinics that feel like factories, where young people are processed quickly without any warmth or understanding. The solution, they said, is to create spaces that are welcoming and designed specifically for youth. This could mean setting aside specific hours in the day when only young people are seen, so they do not have to wait in lines with older adults or small children. It could also mean training healthcare workers to speak with empathy and patience, treating the young person as a partner in their own care rather than just a patient to be managed.

Perhaps the most powerful idea to come out of the research is the role of peers. The young people interviewed suggested that the best way to reach others like them is through other young people who have already survived the disease. A young person who has been through the fear, the pain, and the recovery can offer a kind of hope and understanding that a doctor cannot. These survivors can act as mentors, visiting schools or community centers to share their stories and show that tuberculosis is treatable and that life can return to normal. They can help others navigate the social minefield of the disease, offering advice on how to take medicine in secret if necessary, or how to talk to family members without fear. The researchers found that when young people saw others who had recovered, it gave them the courage to stick with their own treatment.

The study also highlighted a gap in care that often goes unnoticed: what happens after the treatment is finished. For many young people, the end of the medication does not mean the end of the struggle. Some continue to suffer from breathing problems or chest pain, a condition known as post-tuberculosis lung disease, which can limit their ability to work or play sports. Others struggle to rebuild their social lives, finding that the stigma of the illness lingers even after they are no longer infectious. The participants expressed a strong need for follow-up care that checks on their physical and mental health long after the last pill is taken. They want to be reminded that they are not alone, that their recovery is a journey that continues, and that there are people who care about their future.

This research paints a picture of a generation that is resilient but vulnerable, caught between a disease that demands strict discipline and a society that often offers judgment instead of support. The findings suggest that to truly fight tuberculosis among young people, the approach must change. It is not enough to simply provide medicine; the system must adapt to the lives of the people it is meant to serve. By involving young people in the design of their own care, by reducing the shame that surrounds the disease, and by offering the practical support they need to stay on track, it is possible to turn the tide. The young people in this study did not just ask for better treatment; they asked to be seen, to be heard, and to be included in the solution. Their experiences show that when the barriers of fear and poverty are removed, and when they are given the tools to heal, they can overcome even the most stubborn of diseases.