Navigating uncertainty: pre-diagnostic tuberculosis experiences and care-seeking in Blantyre, Malawi

Introduction Tuberculosis (TB) remains a major public health challenge in Malawi. While diagnostic pathways are well established, less is known about how people experience repeated care-seeking and diagnostic uncertainty before receiving a TB diagnosis. Objective To explore pre-diagnostic TB experiences and care-seeking among adults with TB and caregivers of children with TB in urban Blantyre, Malawi. Methods We conducted in-depth interviews with 14 participants in urban Blantyre, Malawi (five male patients, five female patients, and four female caregivers acting as proxies for pediatric TB patients under 11 years). Data were coded deductively and inductively, then analyzed using a framework approach. Social Cognitive Theory informed the interview guide, and Candidacy Theory informed interpretation of access to TB investigation across multiple healthcare encounters. Results Participants described prolonged, distressing pre-diagnostic journeys, with early symptoms of TB frequently misattributed to malaria or minor respiratory conditions. As symptoms persisted, participants reported repeatedly seeking care, often attending health facilities multiple times before TB testing was initiated. These encounters did not provide immediate diagnostic resolution and represented participant-reported opportunities for earlier TB investigation. Participants’ social networks shaped decision-making along the pathway, occasionally reinforcing misattribution but often prompting escalation to formal care. Repeated unresolved encounters imposed substantial economic burden on participants and their families, including loss of income, business disruption, and increased reliance on family support. Conclusion In urban Malawi, participants described TB diagnostic pathways shaped by symptom uncertainty, social and material circumstances, and repeated healthcare encounters without timely diagnostic resolution. The findings highlight the potential value of reassessing persistent or worsening symptoms during repeat encounters. Strengthening such reassessment may support integrated, patient-centered TB care and reduce avoidable socioeconomic burden.