Stigmatization of HIV-infected individuals

Contents

Introduction:

Stigmatization

Social consequences of stigmatization

What can be done against stigma?

Impact on the individual

Coping strategies:

Internalized stigma

Stress

Depression

A patient’s perspetive

Evaluation

References
3. Ciesla JA, Roberts JE. Meta-analysis of the relationship between HIV infection and risk for depressive disorders. Am J Psychiatry. 2001:158(5):725-30 13

Introduction:

This review paper is intended to summarize and discuss the causes as well as the consequences of stigmatization as a response to AIDS / HIV. In the beginning, focus will be on the influence of the community, reflecting the sociological perspective of the problem. Secondly, the impact on the infected individual is approached, which poses the psychological part. Extensive research has been carried out on this sociologically and psychologically highly challenging matter and there is consensus that action is required to eradicate stigmatization.

Stigmatization

According to Alonzo and Reynolds [2] AIDS / HIV is associated with an undesirable and unaesthetic form of death. Mawar et al. [8] explain that patients with HIV are frequently blamed for their infection through risky behaviour and violation of certain social norms. Both ignorance of the community and fear of health care providers to be infected lead to a high degree of multidimensional stigmatization.

Stigma may not be generalized since it always incorporates cultural values and attitudes. It is therefore described by Mawar et al. as “a depiction of life as an individual experiences it within the social cultural milieu” [8]. It is an additional burden for the patients, whose lifes are coined by fear of discrimination. At this stage differentiation between felt and enacted stigma is helpful. Enacted stigma relates to sanctions individually or collectively applied upon those with HIV, whereas felt stigma refers to shame and fear of enacted stigma [8].The latter is regarded as the most influential factor.

Social consequences of stigmatization

Stigmatization related to AIDS has far-reaching consequences regarding the patient’s rights, health, personal freedom, identity, access to social support as well as progression and spread of the disease - aspects which will be addressed in the following:

Most threatening to a community is that stigma can deter people from being tested. Thus the disease can spread and prevention is hindered.

A great number of obstacles are experienced by the infected person in form of public reactions: Isolation from the family, loss of job and banning entry to HIV infected individuals are not rare events in many parts of the world. Even children are sometimes not admitted to school [8], which highlights the need for action.

The contagious character of AIDS evokes anxiety and fear, which results in less social and medical support for the patients. Fear of infection probably prevents health care providers from giving a HIV-infected patient the treatment he has a right to receive.

An important result of enacted stigma is the withdrawal of friends, family and acquaintances putting the patient into a state of loneliness and making it difficult to cope with the disease.

When the symptoms become evident to everybody people tend to react on the patient with sympathy. However, it is important to note that this is an expression of enacted stigma. It may be kinder than rejection but it does not reflect acceptance [1].

What can be done against stigma?

Researchers consider it a highly challenging and imperative task to develop strategies to reduce HIV-related stigma [8,6], which needs to be aimed at both the individual and societal level. According to Mawar et al. [8] social norms based on acceptance and respect for HIV infected persons are needed. Concrete suggestions, however, are scarcely made. Jewkes [6] reacts towards the contemporary attempts, including increasing knowledge of HIV and antidiscrimination legislation, with negative expectations. She suggests to achieve the behaviour change by shifting “discourse from the negative (this is what we do and it is wrong) to the empowering (this is what we do, we care for people with HIV/AIDS).”

One aspect which is not included in the literature is the matter of time. I hypothesize that a generation growing up while the disease already exists is less likely to stigmatize than a generation that can recall the outbreak of the epidemic and witnessed the initial helplessness and accusation of the risk-groups.

This question could be tackled by an adequate quantification method such as IAT, which measures stigma and was developed in India [8]. Several modifications may be necessary because stigma is unstatic and dependant on culture.

Should the hypothesis be proved correct a natural and slow fall in stigmatization can be expected for the upcoming years. Thus I do however not plead for reduction of the effort that is made to eliminate stigma. Because of the urgency of the issue efforts must continue.

A natural normalization combined with a fall in stigmatization has been observed in Africa [6], information which originates from a not very trustworthy article, though. Comments in class indicated that opposing results were found.

Normalization may be a positive development for infected people, yet the normalization is threatening to society if it does not go hand in hand with awareness training in order to prevent people from acting naively and thus getting infected.

Impact on the individual

Stigma imposes severe hardships on people living with HIV /AIDS as well as their families and friends. In order to find solutions to their problems it is imperative to understand how stigma is experienced. Alonzo and Reynolds [1] depict four stages of the HIV/AIDS illness course in relation to stigma, where stigma is differentially managed and experienced.

1) The at risk stage is defined as the time before being tested and is coined by a pre-stigmatic fear.
2) The diagnosis corresponds with the receipt of the diagnosis and is characterized by a strong stress response, anger and depressive symptoms. The patients must come to terms with a shortened life-expectancy and their HIV+ identity.
3) latent specifies the asymptomatic stage of the disease, when felt stigma in terms of fear of rejection together with strong feeling of stress is frequently observed.
4) The manifest refers to the symptomatic phase, during which patients face full enacted stigma.

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