We are all responsible for addressing Hansen's disease-related stigma
by Anna van't Noordende
and Roos Geutjes
Impact of stigma
“. . .No, I did not tell my friend. I kept it hidden (. . .) because people have a bad perception about leprosy in society. Later people start thinking bad about it [being affected by leprosy] for instance “don't keep him with us”...”
Hansen’s disease (or ‘leprosy’) is one of the most stigmatized diseases known today and it has been for centuries (1, 2). The above quote is from a young Indian man who is affected by Hansen’s disease (3). It illustrates the way Hansen’s disease is perceived in many societies around the world: many people have a negative perception towards the disease and persons affected by it (1-3). Indeed, the impact of Hansen’s disease-related stigma on a person’s life can be devastating: it may affect someone’s marriage and marriage opportunities, interpersonal relationships, employment and employment opportunities, leisure activities, overall social participation (2), quality of life and mental wellbeing (4). Close contacts of persons affected by it, such as family members and friends, may also experience discrimination (1, 2). In addition, stigma has a negative impact on early detection, prevention, help-seeking behaviour, adherence to treatment and prevention of disabilities (2). Reducing stigma is therefore essential not only to improve the lives of persons directly and indirectly affected by the disease, but also to improve strategies for early case detection (3). Stigma is a barrier to zero transmission, zero disabilities and zero discrimination.
Limited resources available
Given the profound impact stigma can have on people’s lives, addressing stigma is often considered the most important issue for persons affected by Hansen’s disease around the world (5). Stigma however, has received relatively little attention in national programmes, compared with other Hansen’s disease-associated issues such as early diagnosis and treatment (5). Even though the main focus of Hansen’s disease programmes has been on early diagnosis and treatment, several research projects and studies have been conducted to understand and reduce Hansen’s disease-related stigma and stigma related to other neglected tropical diseases (NTDs) (6). Although interventions to reduce Hansen’s disease-related stigma have been developed and implemented over the years, the effectiveness of these interventions has not always been assessed (properly) (6). At the same time, not all work on stigma reduction has been published in scientific journals or online – some work is covered in annual reports or other documentation that may be more difficult to find. Additionally, not all stigma reduction tools and approaches are easily accessible or available. With limited resources allocated to Hansen’s disease (the disease predominately affects poor and marginalized populations), it is especially important that existing, practical, cross-cutting tools for stigma reduction are shared and used, to improve the lives of those experiencing stigma and discrimination.
Guides on Stigma and Mental Wellbeing
Recently, a group consisting of persons personally affected by NTDs, researchers, programme managers, field staff and mental health professionals joined hands and developed the Guides on Stigma and Mental Wellbeing. These Guides (that consist of four modules) provide best practice information and recommendations from various disciplines on how stigma manifests, how it can be reduced, and the tools available to assess the experience of stigma and mental wellbeing. Mental wellbeing an integral component of the Guides. The Guides consist of cross-cutting interventions and tools to allow for comparison between the different NTDs (7). Although written with a focus on NTDs, the content is relevant for people working to address all forms of health-related stigma and promote mental wellbeing in their interventions, policies, trainings, care packages, evaluations, or other services.
Health and Social Welfare departments, development programmes and other agencies can use these Guides to promote access and inclusion of persons affected by Hansen’s disease (or other NTD-related) disabilities into their services, activities and facilities. The Guides are also a useful resource for those responsible for training people working in services where clients may experience stigma and poor mental wellbeing. People who have experienced or are at risk of experiencing stigma and may be distressed as a result, along with their family members and carers, can also use the Guides as a resource to help them cope.
We are all responsible
It is important that stigma receives the attention that it deserves. People, even health professionals, are not always aware of their stigmatizing behaviour towards persons affected by Hansen’s disease. It is therefore important that this topic is discussed, and that people understand what stigma is, how it is caused and how it can be reduced. “I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” (a quote by Mother Teresa). This is true for stigma reduction also. Read the Guides on Stigma and Mental Wellbeing through stigmaguides.org and find out what you can do to fight and end stigma!
Rafferty, J. (2005). Curing the stigma of leprosy. Leprosy review, 76(2), 119-126.
Van Brakel, W. I. M. H. (2014). Stigma in leprosy: concepts, causes and determinants. Leprosy review, 85, 36-47.
van‘t Noordende, A. T., Korfage, I., Lisam, S., Arif, M. A., Kumar, A., & van Brakel, W. H. (2019). The role of perceptions and knowledge of leprosy in the elimination of leprosy: A baseline study in Fatehpur district, northern India. PLoS neglected tropical diseases, 13(4), e0007302.
Tsutsumi, A., Izutsu, T., Islam, A. M., Maksuda, A. N., Kato, H., & Wakai, S. (2007). The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh. Social science & medicine, 64(12), 2443-2453.
Global Partnership for Zero Leprosy Research Agenda Working Group Subgroup on Stigma. https://zeroleprosy.org/wp-content/uploads/2019/06/GPZL-RWG-Stigma.pdf
Heijnders, M., & Van Der Meij, S. (2006). The fight against stigma: an overview of stigma-reduction strategies and interventions. Psychology, health & medicine, 11(3), 353-363.
Van Brakel, W. H., Cataldo, J., Grover, S., Kohrt, B. A., Nyblade, L., Stockton, M., ... & Yang, L. H. (2019). Out of the silos: identifying cross-cutting features of health-related stigma to advance measurement and intervention. BMC medicine, 17(1), 13.