Stigma & discrimination
- Research priorities: Stigma and discrimination
- Country: Indonesia
- Budget: € 23,200 | Project number 706.18.20
- Duration: May 2018 -April 2020
- Status: Completed
People with leprosy, but also people with other conditions can feel ashamed and shy because of their disease and might be excluded or discriminated against. However, people's life experiences are not only determined by this health-related stigma but by a multitude of socio-economic factors. This project explores the intersectionality of inclusion in order to find recommendations for stigma reducing interventions.
Intersectionality of inclusion for health-related stigma reduction
Project Coordination
Partners
Project summary
People with leprosy, but also people with other conditions can feel ashamed and shy because of their disease and might be excluded or discriminated against. Health-related stigma is an important area of research in the field of global health. A lot of research has been done in field of stigma. Normally researchers tend to focus on gaining insights in health-related stigma and exclusion. While this is valuable, it is also important to gain insights into inclusion. Intersectionality refers to the idea that every person bears multiple social identities associated with race, gender, age, ethnicity, sexuality, nationality, health status, etc. which are intricately interconnected with each other and jointly shape life experiences – including experiences of inclusion and exclusion - of the person.
The objective of this project (which is also a PhD study) is to gain insights in the dynamics around inclusion for different stigmatized health conditions (e.g. leprosy, HIV/AIDS, tuberculosis, mental illness, stigmatized Neglected Tropical Diseases) in different settings in Indonesia and to provide recommendations for generic and specific interventions and future implementation. This is a participatory and qualitative study using research methods such as interviews and focus group discussions. This study is part of the Erasmus Mundus Trans Global Health programme.
Related publications
Rai, S. S., Irwanto, I., Peters, R. M., Syurina, E. V., Putri, A. I., Mikhakhanova, A. & Zweekhorst, M. B. (2020). Qualitative Exploration of Experiences and Consequences of Health-related Stigma among Indonesians with HIV, Leprosy, Schizophrenia and Diabetes. Kesmas: National Public Health Journal, 15(1), 7-16.
Rai, S. S. (2021). Exploring the Dimensions of Health-related Stigma: Insights from narratives of people with stigmatized health conditions in Indonesia. PhD Thesis
- Research priorities: Stigma and discrimination
- Country: Bangladesh
- Budget: € 23,616 | Project number: 705.17.23
- Duration: March 2017 - September 2019
- Status: Completed
This study aims to demonstrate that the impact of CBR can be measured in a robust manner, and to provide information to future researchers about what assessments were useful.
Long term attributable impact of Community Based Rehabilitation in North West Bangladesh
Project Coordination
Partners
Project Summary
There is limited evidence available to support the impact of Community-Based Rehabilitation (CBR). CBR is a flexible intervention with many types of approaches. No previous study has had a control group running at the same time as the intervention for an extended period of time to validate the results of the intervention.
This study is a continuation of a study that followed 1500 people over two years and showed that CBR had a measurable impact in this context. The plan is to follow up with the same individuals after 5 years of being in a CBR group to see if the impact is different from that which was seen after 2 years. The hope is to demonstrate a greater impact at five years than was seen after two years.
The study will send a research team to visit the individuals in their homes and complete the 3 standardized assessments by reading it to them and recording their answers. The staff read the assessments to the participants since most participants cannot read. The findings of the study will be analyzed by a sample of group members to get their assessment and to explore possible causative factors.
- Grant: LRI Regular Grant
- Research priorities: Stigma and discrimination
- Country: Indonesia
- Project no.: 704.16.47
- Budget: € 65,208
- Duration: May 2016 - September 2019
- Status: Completed
Full project title:
Promoting inclusive and enabling environments for persons affected by leprosy and with other disabilities in Indonesia
Project coordination
NLR Indonesia
Partners
CBR Development and Training Centre (Solo, Indonesia)
Universitas PancaSakti (Tegal, Indonesia)
Difabel Slawi Mandiri (Slawi, Indonesia)
Aim: This research aimed to produce knowledge on barriers and facilitators in disabled people’s lives, and develop solutions and recommendations to support decision-makers in developing adequate policies.
Final project summary
Indonesia has a disability prevalence of 10-15%, which suggest that it is home of 20-30 million of persons with disabilities, including those disabled by leprosy. Not one single sector of the government can be responsible for their well-being, but disability is the shared responsibility of all sectors and stakeholders. Data on disability however are missing, and thus it is difficult to advocate for a multi-sector approach towards inclusive and enabling environments.
This research aimed to produce knowledge on barriers and facilitators in disabled people’s lives, and develop solutions and recommendations to support decision-makers in developing adequate policies. The research was conducted in the district Tegal, Province Central Java, in Indonesia. Persons with disabilities were trained as researchers and were actovely involved in the data collection tools designing, the data collection and interpretation of data.
The research team conducted numerous activities, including weekly meetings and data analysis using Open Code software, which required multiple trials for proficiency. The team identified gaps in the initial data, leading to five Focus Group Discussions (FGDs) on Education, Health, Economics, Socio-Culture, and Politics, each involving 9-12 participants. These discussions provided diverse perspectives that enriched the research findings.
Key findings include:
- Economy: A significant number of respondents were entrepreneurs, but many lacked necessary skills or found training insufficient for employment.
- Health: Most respondents could access free government health insurance and good treatment, but infrastructure improvements were needed, particularly for persons with disabilities.
- Education: While financial support was available for children of disabled parents, accessibility and teacher training issues persisted.
- Politics: Participation in elections was high, but involvement in political organisations was limited.
- Socio-Culture and Religion: Participation in community activities was common, but physical accessibility remained a challenge.
A dissemination workshop was organised in Tegal to present the research findings to relevant stakeholders. This event was attended by various stakeholders from the Tegal district, including local government institutions, non-governmental organisations, local Disabled People's Organizations (DPOs), universities, and national-level ministries including the Ministry of Health, Ministry of Social Welfare, Ministry of Education, Ministry of National Development Planning, and the Executive Office of the President. Participants raised numerous questions, suggestions, comments, and expressions of appreciation. The dissemination workshop marked the beginning of a long journey toward achieving inclusive development and society in the Tegal district and Indonesia.
Impact
Presentation at the LRI Spring Meeting 2018 and 2019
Dissemination workshop in Tegal
- Grant: LRI Regular Grant
- Research priorities: Stigma and discrimination
- Country: Nigeria
- Project no.: 704.16.34
- Budget: € 51,820
- Duration: February 2016 - April 2018
- Status: Completed
Full project title:
The role of Christian churches in leprosy and disability related stigma, in the Nigerian middle belt states
Project coordination
Enablement
Partners
The Leprosy Mission Nigeria
University of Jos
Aim: This study explored the perceptions of various Christian leaders and church members in the Nigerian middle belt states on leprosy, and their perspective on possible interventions in church life that help to reduce leprosy-related stigma.
Final project summar
Leprosy related stigma is part of everyday reality in Nigeria. Many researchers and organisations over the years have aimed at increasing peoples’ knowledge about leprosy as a disease, with the idea that this would reduce stigma towars persons affected by leprosy. However, despite increased knowledge about the details of leprosy, persons affected by leprosy are often still excluded from community life.
As religion, and in specific Christianity, has often associated leprosy as caused by sin, the church plays a crucial role in reducing stigma. It has been concluded in recent studies that to address leprosy related stigma, it is crucial to involve church leaders and to explore the positive role that the church could have in increasing acceptance and inclusion of persons affected by leprosy.
As leprosy is still present in Nigeria and because of its high population of Christians, the research group aimed to better understand the role that church leaders in Nigeria can play in reducing leprosy related stigma.
The goal of this project was to measure to what extent people affected by leprosy are stigmatized and to identify the characteristics and causes of such stigma with the long-range goal of creating tools for the church and NGOs that will help reduce stigma among Christians. In addition to surveys and interviews, the researchers conducted focus group discussions with different stakeholders: CAN officials, ministry of Health officials and NGO representatives – as well as with persons affected by leprosy. The researchers organised four focus group discussions with persons affected by leprosy, and four focus groups with other stakeholders.
Results so far indicate that the amount of contact one has with people affected by leprosy is directly proportionate to their understanding of leprosy and stigma towards the disease and people affected by it. In addition, it seems that a good overall education does not necessarily imply good knowledge about leprosy nor prohibit stereotypical responses toward people affected by leprosy.
The results of the project help to improve the understanding of leprosy and improve the situation of people affected by leprosy first of all by acknowledging that stigma-reducing policies and interventions should not just focus on educational efforts. Rather, as becomes clear from this research, future studies should look into strategies of stigma-reduction whereby people get to know/become exposed to people who are affected by leprosy.
- Grant: LRI Regular Grant
- Research priorities: Stigma and discrimination
- Country: Nepal
- Project no.: 704.16.06
- Budget: € 20,130
- Duration: February 2016 - July 2016
- Status: Completed
Full project title:
Social exlusion/inclusion and livelihood status of leprosy affected people in Nepal
Project coordination
Rehabilitation, Empowerment and Development (READ) Nepal
Partners
NLR Nepal
Aim: The pilot study gives an overview of the situation regarding social exclusion/inclusion of leprosy affected people in two high endemic districts in Nepal: Udayapur and Jhapa.
Final project summary
The purpose of this study was to create an overview of the situation regarding social exclusion/inclusion of leprosy affected people in the two most leprosy endemic districts of Nepal, Udayapur and Jhapa. Particularly, this project aimed to find out whether the livelihood status of leprosy affected people is different from that of others. This study also aimed at exploring some of the major socio-economic and cultural barriers that might have hindered leprosy-affected persons’ access to health services, rehabilitation programme, education, employment, livelihood opportunities and to social participation.
Several important observations have been made during this study. For instance, this study shows that while direct physical social exclusion of people affected by leprosy is rare, the practice of social exclusion and participation restrictions on them exists in the community in less visible forms. The exclusion and asymmetry of relationships are more prevalent in the realm of mental behaviour rather than physical actions. For example, the fear of stigmatisation, which seems to be rooted in certain religious orthodoxy, has constrained the participation of people affected by leprosy in socio-cultural life.
When the study refers to the exclusion and restriction of people affected by leprosy, it does not mean physical obstruction created by family and community members. Instead, the data shows that some social and religious practices, such as performing 'purans' and the practice of reading 'Swasthani Brata Katha,' are major social and cultural practices contributing to the stigmatisation of leprosy and those affected by it. This can be seen as a socio-cultural process through which people internalise leprosy, create meanings, and define and interpret the condition. As a result, this process forms the perception of reality for most people in society. Consequently, such processes have led to feelings of self-inferiority, sadness, frustration, loss of confidence, devaluation of their own capacity, stress, and hopelessness.
The study has indicated that this invisible form of stigmatisation has resulted in an invisible form of exclusion and inclusion, which, as the results show, has limited the access of people affected by leprosy to health programs, employment, livelihood opportunities, and other resources available at the local level. The research findings also show that some people affected by leprosy have converted to Christianity as a resistance strategy. It will be equally important for future investigations to explore how people affected by leprosy resist such socio-cultural processes by adopting various strategies that shape their lives and redefine the meaning of leprosy itself.