A94-03 Tracing the Tuberculosis Journey: Understanding Adolescents and Young Adults Experiences in Nairobi Using Participatory Methods 2025
R P Karisa, J Chakaya, J W Kagima, B Ringwald
American Journal of Respiratory and Critical Care Medicine · 2026-05
Abstract
Abstract Rationale Adolescents and young adults (AYA) with tuberculosis (TB) face unique barriers in accessing and completing care, yet they have historically received limited attention and few tailored interventions. Evidence on effective strategies to support AYA remains scarce. This study explores the experiences of AYA with TB in Nairobi, Kenya, and identifies interventions to enhance engagement in care. Methods We conducted four full-day participatory workshops with 37 AYA aged 15-24 years from six Nairobi health facilities who had successfully completed TB treatment. Participants were grouped by sex and age (15-19 vs. 20-24 years) to encourage open discussion on care-seeking, diagnosis, treatment, and post-treatment experiences. Workshops included the “Rivers of Life” tool, enabling participants to map their TB journey, highlight key events, challenges, and turning points. Data were analyzed iteratively using thematic analysis to identify barriers, facilitators, and opportunities for youth-centered interventions. Results Findings are organized along the four steps of the TB care cascade. Case finding: AYA reported prolonged symptoms and delayed TB recognition, often due to reliance on informal care, stigma, and repeated missed clinical opportunities. Diagnosis: Participants described that diagnostic pathways were lengthy and emotionally taxing, with misdiagnoses and delayed testing; confirmation of TB brought relief. Treatment: Once initiated on therapy, AYAs demonstrated strong motivation to adhere, driven by a desire to recover and return to daily life; however, they faced challenges including stigma, medication side effects, school and work disruptions, and emotional strain. Supportive health providers, family involvement, and flexible treatment arrangements were central to maintaining adherence. Treatment completion: Completion of treatment was associated with pride, renewed confidence, and resumption of normal activities, though some participants continued to face lingering social stigma and employment-related consequences. Conclusion AYA with TB face delayed diagnosis, emotional distress, and social and structural barriers across the care cascade. However, they demonstrate strong treatment commitment when supported by family and youth-responsive healthcare providers. Tailored, youth-centered strategies, including early screening, mental health support, stigma reduction, and flexible treatment delivery, are essential to improve timely diagnosis, retention, and outcomes. Participatory approaches such as “Rivers of Life” provide critical insights into patient journeys and can guide interventions that address the specific needs of this vulnerable population. This abstract is funded by: Not applicable
MeSH terms
- Medicine
- Thematic analysis
- Young adult
- Psychological intervention
- Tuberculosis
- Tb treatment
- Qualitative research
- Citizen journalism
- Health care
- Family medicine
- Gerontology
- MEDLINE
- Nursing