Health-related stigma

Text by Wim van Brakel
Health - Leprosy Unit, Royal Tropical Institute

Stigma related to chronic health conditions such as HIV/AIDS, leprosy, tuberculosis, mental illness and epilepsy is a global phenomenon with a severe impact on individuals and their families, and on the effectiveness of public health programmes. The effects on the affected individual include psychosociological stress and depression, fear, various participation restrictions and increased (risk of) disability and advanced disease. Many negative effects on public health programmes and interventions have been reported, including delay in diagnosis and treatment, resulting in continuing risk of disease transmission in case of infectious diseases and in more severe morbidity and poorer treatment prognosis in most conditions. Concealment may result in continued risk behaviour and failure to embrace preventive behaviour in conditions such as HIV/AIDS and TB, and in poor treatment adherence or default from treatment, as has been reported in leprosy, TB, HIV/AIDS, mental illness and epilepsy. In TB and HIV/AIDS, poor treatment adherence increases the risk of the development of drug resistance.

Despite extensive knowledge regarding the consequences of stigma and discrimination, comparatively little progress has been made in systematically addressing these in public health programmes. Many stigma reduction interventions have been carried out, but their effectiveness is often not known. This is partly because tools to measure the impact have not been available, particularly not in developing country settings. Quite a number of scales and indicator sets have been developed, but usually these have been validated in one health field only. Instruments that could be applied across a range of public health areas would allow assessment of stigma reduction strategies and interventions and comparison between different approaches. In addition, good instruments are essential for stigma research. Fortunately, progress is being made and potentially useful measurement tools have been developed, particularly in the field of HIV/AIDS, mental health, epilepsy and leprosy. These should be field-tested more widely, cross-validated between conditions and applied to measure the effectiveness of the many stigma reduction interventions that are implemented across the world.

In addition to causing untold human suffering and significant barriers to public health programmes, stigma and discrimination violate based human rights. The recent adoption of a UN Convention on the Rights of Persons with Disabilities will be an important tool in the fight against stigma. This is just one example of one ‘tool’ that can be used for the benefit of people who are affected by many different stigmatized conditions across the world.

We believe there is much to be gained from collaboration and sharing of knowledge, research findings and tools between experts, researchers and programme implementers working with different stigmatized conditions. Despite apparent differences between conditions and cultures in the determinants of stigma, many cross-cutting issues and synergies can be identified. We believe we can learn a lot from each other!This section contains full-text resources on health-related stigma and discrimination. These resources are in the public domain and may be used free of charge, provided the author and source are acknowledged. Often, they are final draft versions of papers that have been published elsewhere. KIT welcomes further contributions to this section from ICRAAS members or others. These may be submitted to Ilse Egers and should contain a description of the resource and the status with regard to copyright.