A personal journey into leprosy and child stigma
Throughout my career, I have worked across the healthcare sector, but I started volunteering with Lepra knowing little about how leprosy affected children. I have since gained a deep insight into the challenges that children associated with leprosy face in all aspects of their lives. While Lepra’s work is focused on South Asia, this review included children's experiences globally, which, as a Nigerian health researcher, piqued my interest. I have a master’s degree in Global Health Policy, and one of my driving motivations for studying this was the opportunity to learn more about places beyond where I grew up or live now.
Discovering the nine domains of discrimination
In the review, I worked with co-volunteer Srushti Bhorkar to analyse the domains of discrimination the children faced. We found nine domains in the articles we reviewed: four using a pre-established framework and five found as we were looking at the data.The nine domains were: education/schooling; interpersonal relationships/peers; employment opportunities; marriage prospects; access to quality treatment and healthcare; safety/violence; family rejection or household exclusion; enforced family separation, relocation, or institutionalisation; and segregation in the public sphere.
To elicit these domains of discrimination, Shrusti and I divided the work into two. I focused on the deductive codes while she focused on the inductive codes. We went through each article in which a domain of discrimination was identified to examine how discrimination was described in each paper. I thoroughly enjoyed this process. One of the main reasons that I chose to volunteer at Lepra was my love of research. I currently do not work in research, and this Lepra residential gave me the opportunity to flex the research muscles I had begun to forget I had. It was exciting to look through research articles, extract insights, and validate them with my teammates. With their feedback, I was able to see things in new ways, and hopefully, my feedback allowed them to do the same.
The pervasiveness of stigma: from healthcare to the family home
The first thing that stood out to me when looking through all the articles to elicit the domains of discrimination was how pervasive the discrimination against these children was. It seemed inescapable, with the children facing discrimination at home, in school and in the public. Even when they grew up, they still faced discrimination in marriage or in employment. I was especially intrigued by the discrimination in access to quality treatment and healthcare, and in family rejection and household exclusion. I found these most interesting because, with the former, one could be forgiven for assuming that medical professionals would not have the same stigmatising attitudes as the general population. This review showed me how this was not the case.
As with anyone else, medical professionals are products of the environments they grow up with and are assimilated into. Moreover, they are subject to the same biases and stigmatising attitudes as others in their community. Stigmatising attitudes among healthcare professionals are especially worrying, given the power dynamic between healthcare professionals and their patients. With the latter, I had thought that the people who would show the most care for these children would be their families, but this was not always the case. The family is often where children get their first and lasting view of their culture, and thus where stigmatising attitudes, if allowed to foment, have their greatest opportunity to propagate.
A window for policy change
In my view, these two domains of discrimination demonstrate the importance of anti-discrimination education at all levels of society. Within the family, stigmatising attitudes can propagate easily. However, this also means opposing attitudes are just as easy to propagate. Similarly, having healthcare professionals who invest in anti-discriminatory attitudes and practices can help spread these views throughout the community.
I believe there is a strong opportunity for policies worldwide, especially in areas where leprosy is more prevalent, to promote anti-discrimination education and practices among communities and healthcare professionals. As an aspiring health policy professional, this opportunity to study a challenge like leprosy and think through policy solutions was enjoyable, and I thank Lepra and my team for making it so.
The missing African perspective
Another interesting element of this review was the lack of African voices. As a Nigerian, I came into this review curious as to how leprosy-related stigma was expressed in my country and across the African continent. Sadly, true to its status as a neglected tropical disease, leprosy does not come up often enough in discussions about Nigerian healthcare. This is reflected in the review, which included only three studies from Africa, one of which focused on Nigeria. I am sure that the reality for children associated with leprosy in Nigeria is not much different from that of children in India or Brazil. I would love to see more primary research conducted in Nigeria and across Africa.
Thus, I must end this blog with a call for more research into leprosy in Africa. In 2025, according to data from the WHO’s Global Health Observatory, the WHO’s African region had the second-highest number of new child cases, yet we could identify only three studies from that region for our review, highlighting a dearth of information that does not reflect the reality children face.
We have made a small step in the right direction by initiating our global review. As we await the review's publication in a journal, Lepra looks forward to sharing the publication with supporters in due course, when available.
About the author
Ayoposi Ogboye currently volunteers as a Research Assistant at Lepra, in which capacity he has worked on a systematic review of stigma and discrimination experiences among children and adolescents affected by leprosy. He has an MSc in Global Health Policy. Prior to the MSc, Ayoposi worked for a digital health startup and in research.
The study protocol for the systematic review is publicly available on Prospero.
