Project coordination
Vrije Universiteit Amsterdam

Partners
Universitas IndonesiaNew York UniversityNLR Nepal

Aim: This study addressed how the influence of culture on stigma can be taken on board in (generic) approaches to improve assessments and approaches to reduce stigma-related to leprosy, LF and depressive disorders in Indonesia, Nepal and Nigeria.

Full project title:
Capturing culture-specific stigma dynamics by understanding ‘What matters most’ to inform (generic) measures to assess and approaches to reduce stigma: a three country study

Final project summary:
People affected by leprosy often face challenges that go beyond the disease itself. In many communities, they may experience negative attitudes, prejudice, or discrimination from neighbours, friends, family members, and sometimes even healthcare professionals. As a result, many individuals affected by leprosy also struggle with feelings of shame, low self-esteem, or social isolation. Together, these experiences are referred to as stigma.

Recent research has shown that people living with different health conditions often face similar forms of stigma and its consequences. This has created opportunities to develop generic stigma-reduction approaches that can benefit people affected by a range of conditions, rather than focusing on a single disease. Examples include peer-support programmes for people affected by various Neglected Tropical Diseases (NTDs), such as leprosy and lymphatic filariasis (LF), and training programmes that help healthcare workers recognise and address health-related stigma more broadly.

Despite the potential of these approaches, their implementation and scale-up remain challenging. One important gap is the limited understanding of how culture influences the experience of stigma and how cultural factors can be incorporated into generic stigma-reduction strategies. Cultural beliefs, values, and social expectations can profoundly shape how stigma is experienced and expressed.

To address this issue, the study explored the relationship between culture and health-related stigma in Indonesia, Nepal, and Nigeria. Researchers conducted 35 interviews with experts and researchers (16 in Indonesia, 7 in Nigeria, and 12 in Nepal), as well as 120 interviews and 31 focus group discussions with people affected by stigmatized health conditions, healthcare workers, and family members. The data were analysed using thematic content analysis.

This study is among the first to examine how local ideas about what it means to be a “good” or “respected” person can either increase or reduce stigma related to leprosy. The findings demonstrate that these cultural values can strongly influence people's experiences of illness, social acceptance, and access to support.

The research highlights both the importance and the untapped potential of engaging with local cultural values and What Matters Most (WMM) frameworks when designing stigma-reduction interventions. For example, in Nepal, the study found that involving and supporting families can be an effective strategy for raising awareness, providing counselling, improving treatment adherence, strengthening empowerment, enhancing community participation, and ultimately reducing stigma.

The project also contributed to the development of better tools for measuring stigma by piloting and validating a What Matters Most (WMM) measurement tool in Cirebon, Indonesia. This tool can help researchers and programme implementers better understand how cultural values influence stigma and inform the design of more effective and culturally appropriate interventions.

Overall, the findings demonstrate that addressing stigma requires not only medical interventions but also a deeper understanding of the social and cultural factors that shape people's experiences. Incorporating these insights into stigma-reduction programmes has the potential to improve inclusion, wellbeing, and quality of life for people affected by leprosy and other stigmatized health conditions.

Impact

Mol, M. M., Visser, M. J., Rai, S. S., & Peters, R. M. (2023). Measuring health-related stigma: Exploring challenges and research priorities to improve assessment. Global public health, 18(1), 2264960. 

Santosa, A., Sopamena, Y., Visser, M., Dadun, D., Damayanti, R., Yang, L., ... & Peters, R. (2024). Interdisciplinary perspectives on ‘what matters most’in the cultural shaping of health-related stigma in Indonesia. BMJ global health, 9(9).

Visser, M. J., Sutiawan, R., Sopamena, Y., Innoeze, U., Nwefoh, E., Subedi, M., ... & Peters, R. M. H. (2024). Stigma assessment and reduction in communities: Guide to engage with culture using ‘what matters most’. Leprosy Review, 95(3), 0-0.

Sopamena, Y., Sutiawan, R., Visser, M. J., Dadun, D., Damayanti, R., Anshari, D., ... & Zweekhorst, M. B. (2025). What matters most in Cirebon, Indonesia: cultural nuances to health-related stigma. Global public health, 20(1), 2497918.

Visser, M. J., Kc, E. A., Sopamena, Y., Bist, P. B., Bist, S., Subedi, M., ... & Peters, R. M. (2026). Cultural mechanisms of leprosy-related stigma: a gendered analysis using the what matters most framework in far-western Nepal. Qualitative health research, 36(4-5), 440-455.