Stigma & discrimination
- Grant: LRI Regular Grant
- Budget round: 2022
- Research priorities: Stigma and discrimination
- Country: Nigeria
- Project no.: FP22\15
- Budget: €143,346
- Duration: June 2022 – October 2024
- Status: Completed
Project coordination
RedAid Nigeria
Partners
German Leprosy and Relief Association Germany (GLRA)Leprosy and TB Relief Initiative Nigeria (LTR)
Aim: The study aimed to assess the impact of an audio-delivered intervention on the perception of community members with regard to leprosy in Nigeria, by comparing an audio-delivered intervention with written health education messages
Full title:
Participatory development of audio-delivered interventions and written material and assessment of their impact on the perception and knowledge of and attitudes towards leprosy: a cluster randomised trial in Nigeria
Final project summary:
Leprosy continues to be one of the most stigmatized diseases in Nigeria, with many people affected by the disease facing discrimination, social exclusion, and psychological distress. Misconceptions about leprosy, particularly fears about contagion and deeply rooted cultural beliefs, often fuel negative attitudes within communities. At the same time, many persons affected by leprosy internalize this stigma, leading to low self-esteem, reduced social participation, and poorer quality of life.
While health education has been shown to improve knowledge and perceptions about leprosy, traditional approaches often rely on written materials. In settings where literacy levels may be low, written information can fail to reach those most in need. This project explored whether audio-delivered health education messages could provide a more effective way of reducing stigma and improving community perceptions of leprosy.
The study was conducted in two states in Nigeria and involved both community members and persons affected by leprosy. Researchers first assessed existing knowledge, attitudes, and beliefs about leprosy among 811 community members, revealing widespread misconceptions and high levels of stigma. Nearly half of respondents had poor knowledge of the disease, with fears of contagion and cultural misconceptions strongly influencing negative attitudes towards people affected by leprosy.
The project also examined internalized stigma and self-esteem among persons affected by leprosy before undertaking a participatory process to develop intervention materials. Importantly, 18 persons affected by leprosy were actively involved in designing both audio and written educational messages, ensuring that the content reflected local realities, language, and experiences.
The interventions were then evaluated through a three-arm cluster-randomized trial involving at least 770 community members, comparing audio-based messages, written health education materials, and a control group. In addition, the study validated four stigma and perception measurement tools in Nigerian Pidgin English and Hausa, creating valuable resources for future research and programme implementation.
The findings demonstrated that culturally sensitive educational messages can successfully reduce stigma and discriminatory attitudes. However, the study revealed that how messages are delivered can be just as important as the content itself.
The audio-delivered intervention produced the strongest results, significantly improving community perceptions of leprosy and reducing stigma levels. Participants exposed to the audio messages showed reductions of more than 40% on community stigma measures and over 80% on measures of desired social distance, indicating a substantial decline in discriminatory attitudes. While some improvements were observed across all intervention groups, the audio format proved considerably more effective than written materials.
The impact extended beyond community attitudes. Among the persons affected by leprosy who participated in the project, self-esteem improved significantly and levels of internalized stigma declined over time. Many participants became active advocates for leprosy awareness within their own communities, demonstrating the empowering effects of meaningful participation in programme design and implementation.
The study highlights the value of participatory approaches, where people affected by leprosy are not simply beneficiaries but active contributors and leaders. Their involvement helped ensure that messages were authentic, relevant, and impactful, while also reducing self-stigma and building confidence.
As the first study of its kind in Nigeria, the project provides important evidence for the design of future anti-stigma programmes. The findings suggest that audio-based interventions can be a highly effective and accessible tool for improving knowledge, changing attitudes, and reducing discrimination in communities where literacy barriers may limit the effectiveness of written materials.
Importantly, the project's outputs are already being used in leprosy-related anti-stigma campaigns. The evidence generated offers practical guidance for policymakers, health programmes, and community organizations seeking to create more inclusive environments for people affected by leprosy.
By combining culturally relevant messaging, accessible communication channels, and meaningful involvement of affected persons, this project demonstrates a powerful approach to tackling stigma, strengthening community understanding, and helping people affected by leprosy live with greater dignity, confidence, and social acceptance.
Impact
Murphy-Okpala, N., Dahiru, T., van’t Noordende, A. T., Gunesch, C., Chukwu, J., Nwafor, C., ... & Ekeke, N. (2024). Participatory development and assessment of audio-delivered interventions and written material and their impact on the perception, knowledge, and attitudes toward leprosy in Nigeria: protocol for a cluster randomized controlled trial. JMIR Research Protocols, 13(1), e53130.
Murphy-Okpala, N., Dahiru, T., Eze, C., Nwafor, C., Ekeke, N., Abdullahi, S., ... & Chukwu, J. (2024). Investigation of community knowledge, attitudes and stigma towards leprosy in Nigeria: a mixed-methods study. Transactions of the Royal Society of Tropical Medicine and Hygiene, 118(10), 697-709.
Nwafor, C., Murphy-Okpala, N., Eze, C., Ukwaja, K. N., Chukwu, J., van Brakel, W., ... & Ekeke, N. (2025). Cross-cultural validation of the Pidgin-English version of the EMIC-CSS and SDS among adults in Southern Nigeria. Leprosy Review, 96(3), 0-0.
- Grant: LRI Regular Grant
- Budget round: 2020
- Research priorities: Stigma and discrimination
- Country: Indonesia, Nepal, Nigeria
- Project no.: 708.20.12
- Budget: €269,256
- Duration: July 2020 - June 2025
- Status: Completed
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.
- Research priorities: Stigma and discrimination
- Country: Brazil, India
- Status: Completed
Project coordination
Federal University of Santa Maria, Brazil
Quite a number of aspects of discrimination have been researched. Despite these efforts, people affected by leprosy and related diseases still face major barriers to inclusion. This study is exploring a different way of promoting inclusion – focusing on the resilience of the person, and their family.
Promoting inclusion where it matters most: Building resilience in individuals and families based on evidence and participatory methods.
Duration
May 2018 - April 2020
Project Coordination
Federal University of Santa Maria, Brazil
Partners
- Netherlands Leprosy Relief (NLR), The Netherlands
- International Federation of anti-Leprosy Associations (ILEP), Switserland
- ILEP Panel of People Affected, Switserland
- Fontilles (and Hyderabad Leprosy Control And Health Society), Spain
Project summary
If people affected by leprosy (or other neglected tropical diseases, particularly “diseases of discrimination”) are to achieve their rights and full humanity, their inclusion in all aspects of life and society is vital. Unfortunately they routinely experience discrimination in relationships, cultural activities, work, education, leisure, family, livelihoods, etc. In many cases, this also affects the whole family of the person affected. The whole family is discriminated against in many ways. Also, in some cases the person faces exclusion from within their family. This is such a serious problem that for the majority of people, the stigma and discrimination they face becomes internalised, which further exacerbates the problem.
Quite a number of aspects of discrimination have been researched. There has been worthwhile research on repealing laws, on changing attitudes, providing accurate information and on using positive messages in the media, etc. Despite these efforts, people affected by leprosy and related diseases still face major barriers to inclusion. This study is exploring a different way of promoting inclusion – focusing on the resilience of the person, and their family. It is seeking to tackle this vexing problem from the perspective of the person and their family. It is taking a positive approach, focusing on psychological resilience. The study recognises that while there has been considerable research on resilience in areas like disability and HIV/AIDS, for the area of leprosy and other neglected tropical diseases, it is quite new. That is why it is using research methods that are particularly suited to drawing information from other areas, applying this information to a practical intervention, and then conducting a small pilot study to find out if the practical intervention is worthwhile.
Budget
€ 30,182 | Project number: 706.18.46
- Research priorities: Stigma and discrimination
- Country: Nigeria
- Status: Completed
Project coordination
Research shows that religious worldviews determine to a certain extent how people perceive disease and disability. Little research, however, investigated the positive role that religious communities can play in reducing stigma and promoting inclusion of people affected by leprosy.
Leprosy and Religion in Nigeria: the role of Churches and Mosques in stigma reduction.
Duration
June 2018 - November 2019
Project Coordination
Partners
The University of Jos, Nigeria
Project summary
Despite numerous interventions, leprosy-related stigma remains an obstacle to effective treatment and inclusion of people affected by leprosy. Research shows that religious worldviews determine to a certain extent how people perceive disease and disability. Little research, however, investigated the positive role that religious communities can play in reducing stigma and promoting inclusion of people affected by leprosy. This study builds on the 2016-2017 study on ‘The Role of Christian Churches’ and explores the perceptions and attitudes of the Muslim community in Northern Nigeria towards leprosy and those affected by leprosy. Comparison of perceptions from Islamic leaders and communities with their Christian counterparts may help to understand how stigma develops, factors related to its expanding or decreasing and how it can be reduced. Therefore, this study explores the perceptions of Muslim leaders and communities on the cause, cure and consequences of leprosy as well as the way Muslims are told to behave towards those affected by leprosy. Finally, the findings of the two studies will be compared and recommendation made on the role that religious communities can play to reduce leprosy-related stigma.
Research questions
The main research question is the following: How can leprosy organizations collaborate with Islamic and Christian leaders to reduce leprosy-related stigma and promote inclusion of people affected by leprosy in the religious and social community? Resulting in the sub-questions: (1) What are the perceptions of Islamic leaders and believers in Nigeria on causes of leprosy?; (2) What is the attitude of Islamic leaders and believers in Nigeria towards people affected by leprosy?; (3) To what extent are Islamic leaders and believers in Nigeria exposed to people affected by leprosy – and does that influence their perception on leprosy?; (4) To what extent do Christian and Muslim ‘Institutions for Training Religion’ address the topic of disease and disability, in specific leprosy?; (5) To what extent do perceptions on causes, attitudes, and levels of exposure of Islamic leaders and believers agree or disagree with Christian leaders and believers?
Plan of investigation
Data will be collected in four states of Northern Nigeria (Kano, Zamfara, Plateau and Kwara) among Muslim communities of the following divisions: Juma’atu Nasril Islam; Izala; Ansar-Ud-Deen; Qadiryya; and Salaf. After adapting the data collection tool from the 2016-2017 study, making them appropriate for the Muslim community a pilot study will be collected and data collected through interviews with Islamic leaders, Christian lecturers and Muslim lecturers of Institutions for Training Religion. In addition, surveys will be conducted among Muslim communities, as well as focus group discussion with people affected by leprosy. After data collection and analysis, a workshop will be organized together with people affected by leprosy and representatives to discuss the results of the study. Special attention will be given to the role that religious communities can play to reduce stigma and promote inclusion of people affected by leprosy.
Budget
€37,126 | Project number: 706.18.28
- Research priorities: Stigma and discrimination
- Country: Uganda
- Budget: € 50,000 | Project number: 706.18.49
- Duration: May 2018 - July 2019
- Status: Completed
Involvement of persons affected by leprosy and lymphatic filariasis in education, health and livelihood is needed to enable their full participation in all aspects of life. This project explores the situation regarding social inclusion of these people in resource-poor communities.
Promoting inclusion of persons affected by Leprosy and Lymphatic Filariasis (LF) in generic community development.
Project Coordination
Partners
- Kyambogo University, Uganda
- Uganda National Alliance Against Leprosy (UNALEP)
- Ministry of Health/National Tb and Leprosy Control Programme, Kampala, Uganda
Project summary
Involvement of persons affected by leprosy and lymphatic filariasis (LF) in education, health and livelihood is required to enable their full participation in all aspects of life. Social inclusion is considered a human right and a majority of United Nation (UN) Member States, including Uganda, have rectified the UN charter concerning the rights of persons with disabilities.
Leprosy and LF are common among poor communities where access to resources, facilities and opportunities is limited. Both leprosy and LF may lead to visible impairments which may result in stigma, discrimination and social exclusion. Community development programmes are aimed at empowering individuals to identify and mitigate their challenges as a means of improving their quality of life. Empowerment is also an important aspect in achieving an inclusive society. Inclusion of people affected by leprosy and LF requires establishing their participation in community development programmes to inform effective planning and implementation of strategies for improvement.
The specific research questions of this project are therefore:
- How are persons affected by Leprosy and LF involved in Health, Education and Livelihood community development programmes in post-conflict regions and refugee prone regions of Uganda?
- What facilitates and what hinders persons affected by Leprosy and LF from getting involved in community development programmes?
- What problems do persons affected by Leprosy and LF experience in community development?
- What can be done to increase involvement of people affected by Leprosy and LF in community development programmes?