• Research priorities: Stigma and discrimination
• Country: Indonesia, Nepal, Nigeria
• Project no.: 708.20.12
• Budget: €269,256
• Duration: July 2020 - June 2024
• Status: Ongoing

Project coordination
Vrije Universiteit Amsterdam

Partners
Universitas Indonesia
New York University
NLR Nepal

Aim: This study addresses 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, Nigeria and Nepal.

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

Project summary

People with leprosy not only have to deal with the illness, but also with negative attitudes and behaviours from others. Leprosy is often seen as the archetype of a stigmatized condition, but stigma plays in a range in conditions. One of these conditions is lymphatic filariasis (also known as elephantiasis). Lymphatic filariasis is a disease caused by parasitic worms that are spread by mosquitos. Most cases are symptomless, but damage to the lymph system can cause severe swelling in the legs, arms, and genitalia. Another group of stigmatized condition are depressive disorders. Depressive disorders are characterized by sadness severe enough or persistent enough to interfere with function and often by decreased interest or pleasure in activities.

Recent research on health-related stigma recognises the similarities between manifestations and consequences of stigma across conditions and the opportunities this brings for generic approaches. Examples of generic approaches are, for example, a peer counselling intervention for Neglected Tropical Diseases or training on health-related stigma for health professionals. Though these developments are promising, present scaling-up of cost-effective ‘generic’ approaches is hampered by gaps and challenges.

A key gap is the lack of understanding on how the influence of culture can be taken on board in ‘generic approaches’ to assess and reduce stigma. That is, culture can shape the way stigma is experienced by individuals in profound ways. For example, by interpreting a disease as a result of ‘being cursed’ vs. a biological explanation.

Well-known stigma researchers have proposed that the effects of cultural context on stigma can be understood by applying the so called ‘What matters most?’ framework. This study will apply this framework for the first time for the conditions leprosy, LF and depressive disorders. The main research question is: How can 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, Nigeria and Nepal?

Interviews will be conducted with people affected by leprosy, LF and depressive disorders. Family members and health professionals will also be included. Based on the analyses, recommendations will be provided on how to improve existing measurement and develop new ones if needed.

• 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

The Leprosy Mission Nigeria

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

• German Leprosy and TB Relief Association (GLRA)

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:

1. 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?
2. What facilitates and what hinders persons affected by Leprosy and LF from getting involved in community development programmes?
3. What problems do persons affected by Leprosy and LF experience in community development?
4. What can be done to increase involvement of people affected by Leprosy and LF in community development programmes?