• Grant: Research Capacity Strengthening Grant
• Budget round: 2025
• Research priorities: Stigma and discrimination
• Country: Bangladesh
• Project no.: CS_FP25\12
• Budget: €19,650
• Duration: 21 months
• Status: Ongoing

Project coordination
The Leprosy Mission International Bangladesh

Aim: The study explores why stigma varies geographically between Dhaka (urban, high literacy) and Nilphamari (rural, traditional), focusing on the socio-cultural, economic, educational, religious, and disability-related factors.

Full project title: Regional Variations in Social Stigma Toward Leprosy Patients in Bangladesh: A Comprehensive Study

Project summary

Leprosy-related stigma in Bangladesh continues to present a significant public health challenge, which delays diagnosis, isolates patients, and impairs mental health, despite a low burden of 0.27 per 10,000 (2021). This stigma differs between places. This study focuses on understanding these variations by comparing two distinct regions: Dhaka, an urban area with higher literacy and diverse religious practices, and Nilphamari, a rural, traditional setting characterised by lower education levels and a predominantly Muslim population. This comparative approach allows for a focused investigation into how socio-cultural, economic, educational, religious, and disability-related factors contribute to and perpetuate stigma.

By identifying the specific factors that influence stigma in these varied contexts, this research aims to inform more effective and targeted interventions. The importance of the study is underscored by the need to understand such variations to improve health outcomes and social well-being for affected individuals. The insights generated by this research will be critical for informing the development of faith- and disability-inclusive interventions, which are essential for supporting the World Health Organization’s leprosy elimination goals. Therefore, this study aims not only to contribute to the academic body of knowledge but also to yield practical benefits for stakeholders and society.

• Grant: Research Capacity Strengthening Grant
• Budget round: 2025
• Research priorities: Stigma and discrimination
• Country: Indonesia
• Project no.: CS_FP25\8
• Budget: €20,000
• Duration: 24 months
• Status: Ongoing

Project coordination
Tropical Diseases, Infectious Diseases and Herb Research Group

Aim: The study aims to evaluate the impact of the DEDIKASI-App, a culturally tailored mobile application. This follow-up study builds on previous evidence to assess the app's impact among post-RFT (released from treatment) individuals.

Full project title: Evaluating the Impact of the DEDIKASI-App on Self-Stigma Prevention and Knowledge Enhancement Among Post- RFT Leprosy Patients in Indonesia.

Project summary

Leprosy is a disease that still affects many people in Indonesia. Even after completing treatment and being declared cured, many individuals who had leprosy continue to face serious challenges. These include difficulties in caring for their skin, experiencing new wounds or reactions, and most importantly, feeling ashamed, isolated, or excluded from their communities. This shame, called self-stigma, can be just as damaging as the disease itself.

At the moment, there are very few support systems to help people after they finish their leprosy treatment. Many are left alone to manage their health and emotions without guidance. That’s why there is a need for practical tools to help people stay informed, feel supported, and continue caring for themselves confidently.

To help address this gap, the grantee has developed the DEDIKASI-App — a mobile phone application designed specifically for people who have completed leprosy treatment. It contains easy-to-understand information on wound care, mental wellbeing, disability prevention, and ways to stay healthy. The app also includes motivational messages and tools to support users in continuing their self-care routines.

Early testing of the app in a rural community showed that users found it helpful and were willing to use it in their daily lives. A larger study involving over 600 participants demonstrated improvements in knowledge, personal hygiene practices, and early identification of skin-related issues.

The next phase of this project will evaluate the app specifically among people who have already completed treatment for leprosy. The goal is to understand whether the DEDIKASI-App can reduce self-stigma, improve self-care behaviors, and help individuals feel more confident and accepted in their communities. Beyond supporting people in Indonesia, this initiative has the potential to serve as a model for using simple, accessible mobile technology to empower those affected by leprosy around the world.

• Grant: RESILIENTD Grant
• Budget round: 2025
• Research priorities: Social determinants of health
• Country: Ghana
• Project no.: NTD.FP25\108
• Budget: €178,400
• Duration: April 2025 - March 2029
• Status: Ongoing

Project coordination
Kumasi Centre for Collaborative Research in Tropical Medicine

Partners
University Medical Center Groningen
Ghana Health Service
Buruli Ulcer Victims Aid (BUVA) Foundation

Aim: The study aims to establish a prison skin health programme that is acceptable and effective to identify and treat skin NTDs among prisoners in a Ghanaian penitentiary

Full project title: Implementation of a skin Health Programme in a Ghanaian penitentiary

Project summary

Ghana, a country located on the west coast of Africa, is endemic for multiple Neglected Tropical Diseases (NTDs). Co-endemic NTDs in Ghana include leprosy, Buruli ulcer, lymphatic filariasis, scabies and yaws. Ghana has heeded to the global call for the integration of services for NTDs; the recently launched country NTD Master Plan aligns with this global goal to reduce the burden of NTDs to help achieve the Sustainable Development Goals (SDGs). Despite the progress made in the country’s quest to fight NTDs, there has not been a focus on NTDs within the prison setting in Ghana. Prisoners are a key vulnerable population for NTDs. Persons from poor backgrounds and low socio-economic status are most affected by NTDs and this is the same class of persons who are more likely to end up in prison. Within prisons, access to water, sanitation and hygiene services are limited. Further, there is a general poor access to healthcare for inmates and services for skin NTDs are particularly absent within the Ghanaian prison system. Furthermore, overcrowding within prisons can potentiate the spread of communicable NTDs and result in outbreaks.

The goal of this project is to build the capacity of the Kumasi central prisons for the improved detection and management of skin NTDs in partnership with stakeholders including inmates, staff and affected persons. Stakeholders will investigate and co-design a skin health education programme (SHEPP) for the prison to better control skin NTDs. Screening for skin NTDs among incoming prisoners, inmates and staff and investigating relationships between NTDs and social determinants of health to better understand the patterns in the prison context is key for controlling outbreaks of communicable diseases in this setting.

With its focus on a co-designed intervention that is pertinent, timely, context-specific, and directly based on mixed-methods research evidence; as well as its emphasis on training prison staff, this project will plead to unique solutions for skin NTD control in the prison through the development of a knowledge-based intervention from a large, diverse and multidisciplinary team. This project will bring health service delivery to the doorstep of the prison inmates thus enhancing equitable access to healthcare. To maintain context-specific sustainability, the SHEPP project will seek to involve and collaborate with inmates, prison staff, local health workers, and other pertinent local stakeholders (including policy makers) from the Project planning phase through the duration of the Project.

• Grant: RESILIENTD Grant
• Budget round: 2025
• Research priorities: Social determinants of health
• Country: Ethiopia
• Project no.: NTD.FP25\105
• Budget: €190,080
• Duration: March 2025 - February 2029
• Status: Ongoing

Project coordination
The Leprosy Mission Ethiopia

Partners
Armauer Hansen Research Institute (AHRI)
Addis Ababa University
All African Leprosy Tuberculosis Rehabilitation and Research Training Centre (ALERT Hospital)
Ethiopian National Association for People Affected by Leprosy (ENAPAL)
London School of Hygiene & Tropical Medicine
University College London

Aim: The project aims to investigate the social determinants of health and economic status in relation to health outcomes in people diagnosed with leprosy and leprosy reactions at ALERT hospital, Addis Ababa, Ethiopia.

Full project title: The social determinants of health in people affected by leprosy in Ethiopia – a mixed methods study

Project summary

Health as defined by people is not just the absence of illness or pain, it is the presence of wellbeing, it’s belonging, and it’s a sense of purpose. Health disparities and inequities are not inevitable, they are the result of faulty systems. Moving away from acceptance of disparities as inevitable and towards an understanding that we created the conditions that produce inequities and can, therefore, dismantle them. Many inequities result from people being failed across the social determinants of health (SDH).

In this research project,  the researchers aim to explore how non- medical factors, known as SDH, i.e. the conditions in which people are born, grow, live, work and age, may worsen health outcomes for people affected by leprosy in Ethiopia.

Ethiopia had the second highest number of new leprosy cases reported in the African Region in 2022 of whom 39% were women, and the highest number of children (364) with 11.5% having advanced disability at diagnosis. These figures are suggestive of inequality and inequities experienced by people affected by leprosy, visible only at the time of diagnosis.

The World Health Organization (WHO) theoretical framework will help the research team to understand the complex interplay between environmental, biological, and social factors. Gendered roles, social and economic status, education, food security, the physical environment, employment, social networks, access to healthcare - are factors that affect an individual’s risk of acquisition of Mycobacterium leprae infection, development of clinical disease, associated morbidity, consequent disability, care seeking behaviour, adherence to treatment, treatment outcomes, financial hardship and psychological wellbeing.

Seeing the world through the eyes of people who live the complexities associated with leprosy recognises that they are the experts in their own lives. Taking in these perspectives helps us to better understand where to start and to know what actions will produce the most significant change for them. The researchers aim to involve people affected by leprosy from the early stages of this study through an initial survey that will help in describing the landscape of the lives of people affected by leprosy in the Ethiopian context. Findings will guide the co-creation of interview guides as well adapting economic questionnaires which will explore changes in household socioeconomic status of people affected by leprosy, cost of illness and coping strategies over a period of 3 years.

The researchers will also look at available data in published literature and reports, interview people and organisations working with people affected by leprosy and map participants’ “patient journey” as a way of visualising the issues encountered from noticing the first symptoms to getting the right treatment and beyond. This study will be conducted at ALERT hospital in Addis Ababa, the main leprosy hospital in Ethiopia. People with leprosy attending for treatment will be approached and informed about the research. If they are willing to participate, they will be invited to take part in one or two parts of the study and their clinical data will be recorded.