Navigating uncertainty: pre-diagnostic tuberculosis experiences and care-seeking in Blantyre, Malawi
9 affiliations
- 1Chichiri Centre for Health Research and Training, Kamuzu University of Health Sciences
- 2School of Health and Wellbeing, University of Glasgow
- 3Department of Population Health, London School of Hygiene and Tropical Medicine
- 4Department of Epidemiology and Biostatistics, School of Global and Public Health, Kamuzu University of Health Sciences
- 5Department of Global Health, Amsterdam University Medical Centres
- 6Institute of Life Course and Medical Sciences, University of Liverpool
- 7Department of Mental Health, Faculty of Medicine and Health Sciences, University of Zimbabwe
- 8School of Public Health, University of the Witwatersrand
- 9Institute of Resilient Health Systems, Department of Clinical Sciences and Department of International Public Health, Liverpool School of Tropical Medicine
Abstract
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.
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BibTeX
@article{semphere2026navigating,
title = {{Navigating uncertainty: pre-diagnostic tuberculosis experiences and care-seeking in Blantyre, Malawi}},
author = {Robina Semphere and Madalo Mukoka and Takondwa C. Msosa and Hussein H. Twabi and Peter MacPherson and Rufaro Mushonga and Marriott Nliwasa and Moses K. Kumwenda},
journal = {Frontiers in Public Health},
year = {2026},
month = oct,
doi = {10.3389/fpubh.2026.1913596},
url = {https://www.frontiersin.org/articles/10.3389/fpubh.2026.1913596/full},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Navigating uncertainty: pre-diagnostic tuberculosis experiences and care-seeking in Blantyre, Malawi
AU - Robina Semphere
AU - Madalo Mukoka
AU - Takondwa C. Msosa
AU - Hussein H. Twabi
AU - Peter MacPherson
AU - Rufaro Mushonga
AU - Marriott Nliwasa
AU - Moses K. Kumwenda
PY - 2026
DA - 2026/10/27
JO - Frontiers in Public Health
DO - 10.3389/fpubh.2026.1913596
UR - https://www.frontiersin.org/articles/10.3389/fpubh.2026.1913596/full
AB - 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.
SN - 2296-2565
ER -