Abstract
Background Tuberculosis (TB) is a major cause of morbidity and mortality for youth (ages 15–24) globally. We comprehensively investigated youth experiences, care needs, and areas for intervention across the TB diagnosis, treatment, and post-TB care cascade. Methods Youth with pulmonary TB and healthcare workers providing TB care in Eldoret, Kenya, and Mbarara, Uganda, were purposively sampled. In-depth semi-structured interviews examined factors influencing youth TB care engagement, care needs, and areas for intervention before, during, and after TB treatment. Reflexive thematic analysis was conducted. A youth advisory board supported study implementation. Results We conducted 39 interviews, including 25 healthcare workers and 14 youth with TB. Youth median age was 22, 8 (57%) were male, and one was living with HIV. Youth experiences were driven by poor access to care, including for TB testing, treatment support, and post-TB sequelae. School-related factors included risks for TB acquisition, delayed diagnosis, and barriers to adherence, but also opportunities for treatment support. Stigma and limited TB awareness resulted in delayed diagnosis, inadequate treatment adherence, social isolation, and mental health burdens. Experiences of severe illness, post-treatment morbidity, and TB recurrence impacted physical and mental wellbeing. Treatment support and social support were essential, yet were critically undermined by stigma, economic insecurity, and family circumstances. Areas for intervention centered on accessible, person-centered, youth-friendly care, including after TB treatment. Conclusions Youth and healthcare workers detailed the landscape of gaps in care, opportunities, and solutions for youth with TB. Dedicated youth-led interventions may improve TB care access, outcomes, and quality of life.
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