Reimagining youth-responsive TB care: Voices and visions from adolescents and young adults who completed TB treatment in Nairobi, Kenya

Tuberculosis (TB) services often fail to adequately address the needs of adolescents and young adults in many high-TB-burden settings. Despite evidence on the barriers this age group faces across the TB care pathway, young people are rarely involved in designing solutions to improve care that better meets their needs. This study focused on the perspectives of adolescents and young adults who had completed TB treatment in Nairobi, Kenya, engaging them as partners to examine their treatment experiences and co-create ways to improve youth-responsive TB services.

This participatory qualitative study was conducted among young people aged 15–24 years (n=37) who had completed treatment for drug-susceptible TB from six health facilities in Nairobi County. Other study participants included County TB stakeholders, healthcare workers, facility managers and community representatives (n=214). Data were collected in December 2024 through four participatory workshops organised by age and gender to facilitate open discussion of shared lived experiences. Participants in each workshop used visual methods to describe their journey with TB, identified common challenges through group discussions, and proposed solutions to improve TB services for the young people. The findings from the workshops with the young people were subsequently discussed in stakeholder feedback sessions involving healthcare workers, facility managers, community representatives, and county TB actors. Data were analysed thematically across both workshops and feedback sessions.

Results were structured around four interrelated themes. First, young people reported experiencing prolonged illness before diagnosis, with symptoms often normalised or attributed to other conditions, leading to disruption of school, work, and social life. Second, participants experienced lengthy and uncertain pathways to TB diagnosis, characterised by repeated healthcare visits and treatment for alternative conditions before TB was recognised.

Receiving a TB diagnosis represented a pivotal turning point, evoking both fear and concerns about stigma as well as relief at finally understanding the cause of their illness and accessing treatment. Third, support from family and friends helped young people navigate the challenges of illness, diagnosis, treatment, and repeated health-system encounters. Fourth, participants and stakeholders identified practical service adaptations to strengthen youth-responsiveness, including respectful communication, enhanced counselling, peer support, greater privacy within TB service outlets, and flexible medicine collection such as after 5 pm.

Adolescents and young adults with TB navigate multiple social and health systems barriers before reaching diagnosis, initiating treatment, and completing it. Involving young people directly in identifying gaps and priorities in TB care generated feasible opportunities for strengthening youth-responsive services within existing health systems. Further research is needed to evaluate the effectiveness and acceptability of the models proposed by study participants.