Gendered experiences of people living with leprosy or tuberculosis: a global systematic review

Background

Classified as Poverty-Related Diseases, leprosy and tuberculosis (TB) are mycobacterial diseases linked to poverty, stigma, and structural inequities. Gender norms further shape how individuals experience illness, access care and cope with its impacts, but evidence remains fragmented and disease-specific. This systematic review synthesizes qualitative evidence on lived experiences of people with TB (PATB) or leprosy (PAL) globally, and compares how gender inequities manifest across both diseases.

Methods

A systematic review was conducted, following PRISMA guidelines. Peer-reviewed qualitative and mixed-methods studies (1995–present) were searched in PubMed, Embase, Scopus and Web of Science. Studies from all countries and languages reporting qualitative data on gendered experiences of PAL and PATB were included. Screening and extraction were conducted in Rayyan. Inductive thematic synthesis was performed, using MAXQDA. Study quality was appraised with the CASP checklist.

Results

Of 3204 records, 57 studies from 29 countries across 5 continents were included. Women faced greater barriers to care, higher stigma, stronger social exclusion, and more severe marital and familial consequences than men. Men’s experiences were shaped by masculinity norms, particularly regarding economic provision. Despite differences in visibility, chronicity and epidemiology, the psychosocial and economic consequences were strikingly similar across diseases. This suggests that impacts are shaped less by disease pathology than by gender norms, power relations, and social and structural determinants of health.

Conclusions

Gender-based health inequities are pervasive across diseases and settings. Addressing TB and leprosy requires moving beyond biomedical approaches to recognize gender as a key health determinant. Gender-sensitive, participatory, and intersectional strategies are essential to improve early detection, treatment adherence, and long-term socio-economic outcomes.

Key messages

• Across contexts, gender is a pervasive determinant of illness experiences, shaping stigma, care access, and socio-economic impact across diseases and regions, alongside disease-specific differences.

• Despite differences in pathology and global attention, TB and leprosy are shaped by shared social and economic determinants, supporting a combined lens on lived experience and response strategies.