Stigma: the concept of labelling and social exclusion

What is it?

The resources available in this section of the InfoNTD website represent a snapshot of the increasing interest in the links between mental health, stigma, and NTDs. More broadly, this reflects a recognition of the importance of considering quality of life and wellbeing in programming related to NTDs. Mental health, then, is a cross-cutting issue. It is relevant to all aspects of the experience of people who engage with services, and who need to deal with the negative attitudes of, and sometimes social exclusion from, the communities in which they live. Stigma is a widely recognised term, and defined as a social process that is “experienced or anticipated, characterized by exclusion, rejection, blame or devaluation, that results from experience, perception, or reasonable anticipation of an adverse social judgment about a person or group”. Prejudice, negative attitudes and discrimination are part of stigma.

Why is it relevant to NTDs?

Stigma and discrimination, and its mental health consequences affect many NTDs. The prejudice, stigmatization and discrimination that people experience can be more limiting than the condition itself. It may have social, psychological and health-related consequences. Social exclusion is a common consequence, including reduced education and work opportunities, which in turn lead to or may aggravate poverty and may reduce marriage prospects, for example. One common consequence is an effect on mental health, which may include low self-esteem, depression and even suicide.

The level of comorbidity between NTDs and mental health problems has not been adequately recognised in most estimates of illness burden to date. For example, the burden of disease associated with lymphatic filariasis may be around twice as high if comorbid depressive illness is taken into account.

For which NTDs is this relevant?

Stigma, discrimination and mental health are closely associated in the literature with at least 10 of the 18 major NTDs, particularly Buruli ulcer, leishmaniasis, leprosy, lymphatic filariasis, onchocerciasis, certain forms of schistosomiasis, Chagas disease and podoconiosis. The specific way that people affected with different NTDs experience stigma and exclusion varies, depending on factors such as cultural beliefs related to the condition, whether a condition is contagious (or believed to be), and the degree of physical deformity associated.

What are the opportunities for use across NTDs?

Although the reasons why certain NTDs are stigmatized may differ across cultures and religions, there are many common manifestations and consequences of stigma. Also many types of interventions that have been shown to be effective can be used across NTDs. This is true for interventions aimed at reducing NTD-related stigma and discrimination in society (including e.g. health services) and for interventions seeking to prevent or ameliorate negative psychological and social effects in persons affected and their families. Instruments to measure stigma and its effects are available and have been used for studies on several NTDs. They can easily be adapted for use with other NTDs also.

Recognising the links between NTDs and mental health is important; to ensure that health programmes adequately meet the needs of those affected, to improve outcomes for beneficiaries and programmes, and to ensure that NTD programmes receive the resources they deserve for comprehensive approaches to be delivered.

Available evidence suggests that the most effective way to combat stigma and mental ill health are interventions which empower people affected to take a key role in the development and implementation of services that they use.

Evidence-based strategies for promotion of mental health, and stigma reduction include:

  • Governments: improve access to mental health care in mainstream health services; link NTD and mental health services
  • NTD programmes: improve knowledge about mental health and stigma among staff; promote peer support by people affected; challenge negative community attitudes
  • Funders and NGOs: include mental health and stigma reduction as an integral part of investment in programming, recognising the importance of wellbeing as a priority for service users, and for improving outcomes.

 
Read more information and view relevant publications on stigma and mental health.

 

More information
The Mental well-being and Stigma Task Group of the Disease Management, Disability and Inclusion (DMDI) group under the NTD NGDO Network (NNN) aims to make an active contribution to stopping the negative cycle of disability, stigma and poor mental health by promoting mental health and wellbeing, and supporting empowerment of people affected by NTDs. The work of the DMDI group includes development of a toolkit of evaluation instruments, which include those for mental health and stigma.

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