Ending the stigma

While attitudes towards HIV and AIDS have become more tolerant over the years, the disease is still seen by some people as ‘shameful’. This stigma tends to be associated with people that have been more affected by the disease in the past. Also, because of the association with certain practices like sexual intercourse and drug injection, it can be seen as the result of irresponsibility, or as a punishment for behaviours (such as ‘promiscuity’).

This stigma can be directed from people who are HIV-negative towards people living with HIV, but it can also happen between HIV-positive people.

Discrimination in healthcare

In healthcare, this stigmatisation can occur when HIV-positive people try to access care. But it can also occur when health care workers have to care for individuals with an HIV infection. Despite the advances in medical and nursing care, several studies have reported how frequently stigma, prejudice and discrimination are experienced by people living with HIV. For example, 40% of people with HIV say they have been discriminated against by healthcare professionals (Terrence Higgins Trust, 2001)

Stigma can prevent people from having an HIV test, which can then result in delayed access to treatment and care. It can also make the process of testing and the response to a diagnosis of HIV infection much more distressing.

Fear of discrimination may prevent people who are HIV positive from disclosing their status to partners, family or work colleagues. This may have implications for nurses, who should support and encourage people to make positive choices regarding disclosure.

Common forms of discrimination

Discrimination can manifest itself in a number of different ways, but the most common are:

A refusal to treat
Poor advice
Poor treatment
Breach of confidentiality
Unjustified changes in practice and safety procedures.

Discrimination appears to be reported most often in dental surgeries and GP practices.

Research shows people with HIV have come up against the following types of behaviour when attempting to access healthcare: abruptness and dismissiveness, a lack of sensitivity, a failure to consider the person rather than the illness, a failure to listen and understand their concerns, poor information and a lack of awareness of HIV.

The discrimination experienced by some HIV patients is potentially dangerous as it can threaten the effectiveness of prevention and treatment programmes by discouraging people from coming forward for testing. This can delay diagnosis. It can also force people with HIV to hide their status, and increase the likelihood of depression, stress and social isolation. Some patients may even stop attending clinics for treatment altogether.

Preventing discrimination

Discrimination comes in many forms and there are four steps to tackling its presence in whatever clinical environment you work in. They are:

Understanding
Education
Recognition
and Challenging Poor Behaviour

The first two steps in tackling discriminatory behaviour are to understand why it happens and then increase your understanding and awareness. Experience tells us that people discriminate against others when they are afraid of someone or something, when they do not fully understand why or how something works, and when a person’s attitudes, behaviour or beliefs are in some way different from our own.

The factors that may contribute to HIV-related discrimination in health care settings are thought to include:

Lack of understanding about the disease
Myths and misconceptions about how HIV can be transmitted
Fear of transmission
Unfamiliarity and/or lack of confidence in standard precautionary measures
Association of HIV with behaviours and lifestyles that may be different to our own
And prejudice that is already present in society and communities

Here are some tips for increasing your understanding of HIV and the needs of patients who have the disease:

Make sure you know the facts about HIV and how it can be transmitted
Contact your local HIV/Sexual Health service for more information, and invite them to run an education session for you and your team. Contact information can be found in your local Yellow Pages.
If you are caring for someone with HIV, invite them to describe their needs to you. If you consider it to be appropriate and the patient feels comfortable doing so, invite that person to talk to you and your colleagues as a group after their care has finished about his/her needs, their perceptions of the care you provide, and suggestions for how your care as a team can be improved.
Read your organisation’s HIV and AIDS Policy.
Know the standard procedures you should take when caring for someone with HIV
Know what actions to take when exposure has occurred accidentally
Be aware that anti-retroviral drugs can reduce by up to 80% the risk of acquiring an HIV infection following accidental exposure e.g. from a needle-stick injury
Be aware that the risk of exposure to HIV is extremely low providing you take the standard precautions.

The third and fourth steps are to recognise discrimination when it occurs and take action to prevent its re-occurrence. This final step is the most important. Unless discriminatory behaviour or behaviour that is perceived as being discriminatory is challenged, it will be allowed to continue.

So make sure you and your team:

Know the tell-tale signs of HIV discrimination
When you encounter HIV discrimination, even if it is accidental or unwitting, please take action by speaking directly to the person responsible or, if more appropriate, to that person’s line manager.

Department of Health Guidance

The Department of Heath issued an Action Plan (PDF 260KB) [see How to access PDF files] in 2006 aimed at reducing the stigma related to HIV. The document suggested several initiatives that nurses and other health professionals can use:

Embedding an awareness of HIV stigma and discrimination in all HIV related activities
Actively monitoring and challenging HIV discrimination.
Promote ithe self-regard and self-image of people with HIV.
Involving people with HIV in the policy making, planning and commissioning processes.
Awareness of guidance documents, recommended standards and good practice papers.
Evaluate interventions and collaborate with local and national networks to disseminate findings.
Review and update professional guidance, codes of practice and other relevant publications in respect of HIV.