Consequence of Stigma

The impact of stigma on the affected individual can lead to feelings of depression, guilt and shame, as well as to behaviour that limits participation within communities and access to services intended to assist them. Additionally, the fear of being stigmatised can lead to individual behaviour that heightens the risk of transmission.

Psychological impact
Some researchers have focused on how stigmatisation and blame are internalised by affected individuals and how this impacts on their behaviour. According to Aggleton and Parker, stigma and discrimination can lead to self-stigmatization and shame. 'Self-stigmatisation can lead to depression, withdrawal and feelings of worthlessness. It silences and saps the strength of already-weakened individuals and communities, and causes people to blame themselves for their predicament. It has links to what some writers have called 'felt', as opposed to enacted, stigma, in that it affects primarily an individual's or community's feelings and sense of pride.'

Withdrawal from the community and services
Monico, Tanga and Nuwagaba further explore self-stigmatisation in Uganda and find that it often leads affected individuals to police their own behaviour either to avoid being stigmatised or to prevent their serostatus from becoming known to others in the first place. In some cases, self-stigmatisation resulted in an individual's avoidance of particular settings. Such settings include community-based associations established to assist people living with HIV/AIDS.

The fear of being stigmatised results in women, men and young people being unable to look after their sexual and reproductive health, for example, accessing sexual health information, treatment, and methods for HIV and STI prevention, such as the female condom. Thus stigma is evident in and impacts all levels of the prevention-care continuum (Tallis 2002).

Risky behaviour
Affected individuals may choose not to change or adapt their behaviour to reduce the risk of HIV/AIDS transmission for fear that such change would arouse suspicion and stigma.

Choices become particularly difficult for HIV positive women. They include whether to breastfeed their children or not. Breastfeeding offers the best nutrition for a newborn, but also increases the risk of mother-to-child transmission (MTCT) by 10-15%. If a woman chooses not to breastfeed to reduce the risk of transmission, she may be identified as HIV+ and stigmatized by her family/community (PAHO).

Impact on service delivery and employment

People living with HIV are often excluded from social and economic activities as a direct result of stigma. This may include the loss of housing, employment, denial of health care and insurance.

Researching the impact of stigma on employment is difficult due to the fact that employers may well mask their real reasons for dismissing a worker. Investigations undertaken by the Soul City Institute found that many domestic workers in Southern Africa have been unfairly treated when they have revealed their HIV-positive status to employers. The Institute found that in cases where they had been fired from their jobs, the dismissals had occurred largely due to ignorance and an unreasonable fear of the infection on the part of employers.

In response to the wide scale acceptance that wrongful dismissal of seropositive individuals is a serious problem, some organisations have begun to design and implement codes of conduct for managing HIV/AIDS in the work place. The first such initiative was undertaken by the Southern African Development Community.

other documents on codes of conduct:
HIV/AIDS and fundamental rights at work
A human rights approach to AIDS prevention at work

Individuals can also be denied access to information, health services, company and the support they need. Research conducted by Bharat on stigma and discrimination in India found that a large range of services, including health care, were denied to seropositive individuals. Bharat found clear evidence that HIV/AIDS-related stigma and discrimination in India is in some respects a gendered phenomenon. Issues such as inheritance, housing, and caregiving were found to be particularly fraught for women and the quality of care provided to women in the family was significantly poorer than the care provided to men.

Bharat - Summary of findings

Impact on prevention and treatment strategies

HIV/AIDS related stigma and discrimination make prevention and treatment difficult by forcing the epidemic out of sight and underground.

Stigma, silence, discrimination and denial, as well as a lack of confidentiality, contributes to a climate of fear where people are afraid to discover, let alone disclose, their HIV status. This undermines prevention, care and treatment efforts and further increases the impact of the epidemic on individuals, families, communities and nations.

In addition, Bharat, Aggleton and Tyrer argue that due to HIV/AIDS related stigma, appropriate policies and models of good practice remain undeveloped. People living with HIV and AIDS continue to be burdened
by poor care and inadequate services, while those with the power to help do little to make the situation better.

Key documents

Understanding HIV-related stigma and resulting discrimination in Sub-Saharan Africa: emerging themes from early data collection in Ethiopia, Tanzania and Zambia

Time to tackle stigma

India: HIV and AIDS-related discrimination, stigmatization and denial

Uganda: HIV and AIDS-related discrimination, stigmatization and denial