ENDING DISCRIMINATION

Our 2025-2030 strategic goal is to ensure persons affected by leprosy are included in society and will have equal access to their full rights and entitlements. To achieve this, we are working alongside Organisations of Persons Affected by Leprosy, using the latest research findings to inform our efforts to influence policy and change perspectives on leprosy in communities.

Investigating the sustainability of self-help programmes

Self-help groups (SHGs) allow persons affected by leprosy to provide mutual support and form saving syndicates. TLM's teams in India, Nepal, and Nigeria have explored the extent to which SHG programme activities have continued beyond the funding period and record evidence of sustained benefits. The study seeks to determine whether the benefits of these SHGs—such as improved health, financial stability, and social inclusion—persist after external funding ends.

Utilising interviews with both SHG members and programme staff, the research will explore factors that contribute to the continued success or decline of these groups. The findings are intended to inform future strategies for sustaining community-based support systems for marginalised populations.

Democratising research

TLM Trust India are working with the University of Sussex to find more ways to engage persons affected by leprosy as researchers. Through support and training in research principles, two groups of persons affected by leprosy in Maharashtra and Uttar Pradesh are seeking to understand how more persons affected by leprosy can access disability schemes in India and how to ensure more of these schemes are better tailored to persons affected by leprosy.

The researchers will answer these questions through interviews with persons affected by leprosy and the civil servants who administer these schemes, as well as through observation.

Understanding the impact of leprosy on women

TLM Trust India wants to understand how women in rural India navigate their day-to-day life with leprosy-related disability. Through interviews with 20 women, the team established the stigma and misunderstandings that dominated perceptions of leprosy among these women and their communities. They saw the physical consequences, such as leprosy complications, challenges in performing roles such as childrearing, and the impact on social and economic life. The women had faced challenges such as physical and verbal violence, abandonment, self-stigma, and loss of friend and family support. However, the team also established that these women had developed resilience through coping mechanisms, such as spiritual approaches, positive self-talk and mindset, and the catharsis of crying. These findings will help teams as they support women affected by leprosy with the most challenging consequences of the disease.

ENDING DISCRIMINATION

How do we address the leprosy stigma barrier among healthcare professionals?

TLM Niger has recognised that leprosy stigma amongst healthcare professionals was creating barriers in their efforts to end leprosy transmission and reduce leprosy-related disabilities. They have been using funding from the Leprosy Research Initiative to tackle this issue.

Through interviewing persons affected by leprosy, they uncovered that the language used by healthcare professionals in Niger was deeply stigmatising, often mocking physical disabilities and rooted in traditional beliefs that leprosy is a divine curse. Additionally, healthcare professionals isolated persons affected, or even refused to treat them. This resulted in many patients avoiding further treatment, worsening their condition.

The researchers recognised that these attitudes were less common among healthcare professionals that had received leprosy training, so they have worked to expand this training across areas of Niger with high leprosy endemicity using a refreshed and updated leprosy training programme that includes stigma reduction components.

These training materials have been written based on the feedback of persons affected by leprosy. They explain the causes and treatments for leprosy, how to manage leprosy complications, and how to provide compassionate care.

The team have seen that the most impactful way to deliver this training was by ensuring that both healthcare professionals and persons affected by leprosy were acting as the trainers. When those in the training saw how their trainers interacted comfortably together and when they heard about the impact of stigmatising words and behaviours on persons affected by leprosy, their attitudes changed dramatically.

Following these positive results, the researchers have been working with the Ministry of Health to filter these new training resources and sessions across the country. With the research findings due to be published before the end of the year, the team hopes that these training materials will be useful for other countries that may face similar challenges of stigma among healthcare workers.

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