Gendered experiences of people living with tuberculosis or leprosy: A global systematic review
- 1Department of Global Health, Institute of Public Health and Nursing Research, University of Bremen, Bremen, Germany
- 2German Leprosy and Tuberculosis Relief Association Tanzania (GLRA), Dar es Salaam, Tanzania
Abstract
Background: Classified as poverty-related diseases (PRD) leprosy and tuberculosis (TB) are long-standing mycobacterial diseases strongly linked to poverty, stigma, and social exclusion, disproportionately affecting vulnerable populations. Gender norms further shape how individuals experience illness, access to care, and coping strategies, but evidence remains fragmented and largely disease-specific. This systematic review synthesizes qualitative evidence on lived experiences of people affected by TB or leprosy worldwide and compares gender inequities across both diseases to identify shared social and structural determinants. Methods/principal findings: A systematic review following PRISMA guidelines searched PubMed, Embase, Scopus, and Web of Science for peer-reviewed qualitative and mixed methods studies (1995–08/2025) reporting primary qualitative data on gendered experiences of people affected by TB or leprosy. Studies in all countries and languages were eligible. Screening and extraction were conducted using Rayyan. Inductive thematic synthesis was performed using MAXQDA. Quality was assessed using the CASP checklist. A total of 3204 records were identified, with 57 studies from 29 countries across five continents included. Across settings, women experienced greater barriers to diagnosis and care, more severe marital and familial consequences, higher stigma and social exclusion, and greater psychosocial burden than men. Men’s experiences were shaped by norms of masculinity, particularly regarding economic provision and employment. Despite disease differences, psychosocial and socioeconomic impacts were similar across TB and leprosy, embedded in gendered social norms, power relations, and social determinants of health. Conclusions/significance: Gender-based inequities are pervasive across TB and leprosy globally. Comparing both diseases reveals shared social mechanisms beyond biomedical differences. Addressing them requires moving beyond biomedical models and integrating gender as a structural determinant of health. Gender-sensitive, participatory, and intersectional interventions are needed to improve early diagnosis, treatment adherence, and psychosocial and socioeconomic outcomes. Registration: Registered on Open Science Framework (OSF) on 01/09/2025. Author summary: Tuberculosis and leprosy are infectious diseases that remain closely linked to poverty, stigma, and social inequality. In many countries, health services are increasingly combining the two diseases in their control programs because they affect similar populations and share overlapping social and economic drivers. Studying them together can therefore provide useful insights for improving care. In particular, comparing leprosy with tuberculosis, which receives far greater global attention and funding, can help make the often overlooked social and psychological burdens of leprosy more visible. In this study, we reviewed qualitative research from around the world to understand how gender shapes the lived experiences of people affected by tuberculosis and leprosy. We included 57 studies from 29 countries and examined experiences related to seeking care, living with disease, and coping with social consequences. We found that women consistently face greater barriers to diagnosis and treatment, higher stigma, and more severe impacts on family and social relationships. Men’s experiences were strongly influenced by expectations to provide financially and to appear strong and self-reliant. Despite differences between the diseases, the social and psychological consequences were remarkably similar, suggesting they are driven mainly by gender norms and social inequalities rather than medical factors alone.
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BibTeX
@article{unterkircher2026gendered,
title = {{Gendered experiences of people living with tuberculosis or leprosy: A global systematic review}},
author = {Sophie C. W. Unterkircher and Juliana Lenz and Grace Mwasuka},
journal = {PLOS Neglected Tropical Diseases},
year = {2026},
month = sep,
doi = {10.1371/journal.pntd.0014711},
url = {https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0014711},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Gendered experiences of people living with tuberculosis or leprosy: A global systematic review
AU - Sophie C. W. Unterkircher
AU - Juliana Lenz
AU - Grace Mwasuka
PY - 2026
DA - 2026/09/08
JO - PLOS Neglected Tropical Diseases
DO - 10.1371/journal.pntd.0014711
UR - https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0014711
AB - Background: Classified as poverty-related diseases (PRD) leprosy and tuberculosis (TB) are long-standing mycobacterial diseases strongly linked to poverty, stigma, and social exclusion, disproportionately affecting vulnerable populations. Gender norms further shape how individuals experience illness, access to care, and coping strategies, but evidence remains fragmented and largely disease-specific. This systematic review synthesizes qualitative evidence on lived experiences of people affected by TB or leprosy worldwide and compares gender inequities across both diseases to identify shared social and structural determinants. Methods/principal findings: A systematic review following PRISMA guidelines searched PubMed, Embase, Scopus, and Web of Science for peer-reviewed qualitative and mixed methods studies (1995–08/2025) reporting primary qualitative data on gendered experiences of people affected by TB or leprosy. Studies in all countries and languages were eligible. Screening and extraction were conducted using Rayyan. Inductive thematic synthesis was performed using MAXQDA. Quality was assessed using the CASP checklist. A total of 3204 records were identified, with 57 studies from 29 countries across five continents included. Across settings, women experienced greater barriers to diagnosis and care, more severe marital and familial consequences, higher stigma and social exclusion, and greater psychosocial burden than men. Men’s experiences were shaped by norms of masculinity, particularly regarding economic provision and employment. Despite disease differences, psychosocial and socioeconomic impacts were similar across TB and leprosy, embedded in gendered social norms, power relations, and social determinants of health. Conclusions/significance: Gender-based inequities are pervasive across TB and leprosy globally. Comparing both diseases reveals shared social mechanisms beyond biomedical differences. Addressing them requires moving beyond biomedical models and integrating gender as a structural determinant of health. Gender-sensitive, participatory, and intersectional interventions are needed to improve early diagnosis, treatment adherence, and psychosocial and socioeconomic outcomes. Registration: Registered on Open Science Framework (OSF) on 01/09/2025. Author summary: Tuberculosis and leprosy are infectious diseases that remain closely linked to poverty, stigma, and social inequality. In many countries, health services are increasingly combining the two diseases in their control programs because they affect similar populations and share overlapping social and economic drivers. Studying them together can therefore provide useful insights for improving care. In particular, comparing leprosy with tuberculosis, which receives far greater global attention and funding, can help make the often overlooked social and psychological burdens of leprosy more visible. In this study, we reviewed qualitative research from around the world to understand how gender shapes the lived experiences of people affected by tuberculosis and leprosy. We included 57 studies from 29 countries and examined experiences related to seeking care, living with disease, and coping with social consequences. We found that women consistently face greater barriers to diagnosis and treatment, higher stigma, and more severe impacts on family and social relationships. Men’s experiences were strongly influenced by expectations to provide financially and to appear strong and self-reliant. Despite differences between the diseases, the social and psychological consequences were remarkably similar, suggesting they are driven mainly by gender norms and social inequalities rather than medical factors alone.
SN - 1935-2735
ER -