We analyse how social factors, including stigma, discrimination and inclusion, affect the physical and mental health of people with leprosy and evaluate which interventions can tackle exclusion and improve health outcomes. The team also includes myself and Anna Hunt, as postgraduate research interns and we are supported by research volunteers, including Hugo Paula, Ayoposi Ogboye and Srushti Bhorkar.
We work in a close relationship with Lepra UK, Lepra Bangladesh and LEPRA Society staff in India, by ensuring that our research both informs programmes and advocacy materials, and that the insights from these teams are incorporated into our research topics, approaches and recommendations.
Through these reciprocal relationships, we were aware that research studies, evidence from healthcare practitioners and the stories from people with lived experience indicated that prejudicial views, exclusionary acts and discriminatory policies continued to mar the lives of children with leprosy. However, the neglect of leprosy globally and nationally and the lack of child-specific research had resulted in a knowledge gap.
We knew relatively little about the stigma and discrimination children with leprosy face, including the impact of these harmful perspectives and practices on children’s mental health. Our Director of Programmes and Advocacy, Becks Hill, as part of the World Health Organization (WHO) Technical Advisory Group on Children affected by Leprosy, had been raising this lacuna for some time.
Therefore, in the research team at Lepra, aligned to our 2024-2030 Global Strategy’s focus on inclusion, we have embarked on a project to fill this research gap, in partnership with sector experts and practitioners. Our first step has been to complete a systematic review into leprosy-related stigma and discrimination. A systematic review is a research approach where the current literature on a topic is analysed to understand the key messages from the evidence base and to identify where there are research gaps. For our review, we analysed the relevant literature for evidence on which domains of life children experience discrimination in, the types of stigma that they are subject to, and children’s subsequent mental health responses. To ensure our findings can inform policy and practice, we have also analysed the moderating factors, which are the factors that either affect the level of stigma and discrimination in society or moderate the impact on children’s wellbeing. We are currently seeking to publish the review in peer-reviewed academic journals.
The systematic review can be used to inform policy and practice by initiating discussion. Individuals with lived experience, healthcare professionals, teachers and parents can come together to analyse how these findings align with their experiences, how to realise the positive moderating factors, and to identify where more research is needed.
On Wednesday 21st January 2026, we started this process by discussing our findings at a learning forum with our colleagues in Bangladesh and at Lepra Society in India. We shared the high-level findings from our review and then members from the teams in Bangladesh, India and the UK gave their insights on how these findings could inform their work. Additionally, during the forum, Jayashree PK, Lepra Society General Body Member, gave a presentation on her perspectives on the findings. We identified four key themes through these discussions:
Jayashree, a person with lived experience of leprosy, argued that the evidence of discrimination pervading into several life domains reinforced the need for understanding living with leprosy through a lens of social justice, disability and inclusion. Practices such as bullying, household segregation and work-based discrimination should be understood as violating and curtailing children’s rights.
Lepra Society colleagues noted that a means to promote this more holistic approach to care is by tackling poor disease knowledge, which our review argued drives stigma and discrimination. However, as Lepra UK colleagues noted, it is important to avoid disease knowledge campaigns that use stigmatising and fear-based messages. Instead, as Lepra Society colleagues highlighted, we should focus on moving from Information, Education and Communication (IEC) approaches to Behaviour Change Campaigns (BCCs). The messages should aim to change exclusionary behaviour, instead of just focusing on conveying medical information.
Furthermore, Lepra Society colleagues agreed with a recommendation in our review that an effective manner to fight stigma and discrimination is through a whole-family approach to care. To tackle courtesy stigma, and to ensure the household provides support, instead of exacerbating exclusion, we discussed implementing family counselling, developing age-appropriate disease education and having support groups for families. Colleagues highlighted that existing referral centres could be used for whole-family interventions.
These discussions continued to return to schools as a site for interventions. Lepra Society colleagues suggested that inclusive behaviour lessons should be integrated into the curriculum and that schools could function as a platform for whole-family interventions, as children and parents are both present. Jayashree promoted integrating leprosy into schools’ disability policies, developing parental leadership networks and having clear rules: no teasing nor segregation. There was a consensus between participants that these interventions should empower children with lived experience, to include their vital perspectives, improve their self-confidence and to tackle prejudicial stereotypes.
We look forward to sharing our findings in detail once the systematic review is published and continuing to discuss how these findings can inform policy and practice.
Chris Cecil is currently a research intern at Lepra, completing social research into leprosy with a focus on mental health. He has an MPhil in Development Studies from Cambridge University, where he focused on global mental health. Prior to the MPhil, Chris worked for an international education NGO and in the civil service.
