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Stamping out stigma in HIV

  • 33 Comments

Nurses have vital roles in challenging prejudice and tackling the stigma associated with HIV – one that can be exacerbated by well-meaning campaigns and wider prejudices.

In this article

  • The prevalence of HIV infection
  • Why HIV is associated with stigma
  • How nurses can help tackle stigma and prevent HIV infection

Author

Rachel Lewis is development co-ordinator at Milton Keynes STaSS HIV/AIDS support service.

FREE for one week: Identifying and Testing Patients for HIV Infection CPD unit

Abstract

Lewis R (2011) Stamping out stigma in HIV. Nursing Times; 107: 10, early online publication.

Despite significant developments in the treatment of HIV infection, the condition is still heavily stigmatised. This article discusses why this is so, what can be done to help change negative attitudes towards people with HIV, and how nurses can help reduce stigma.

Keywords: HIV, stigma, discrimination, prevention

  • This article has been double-blind peer reviewed

5 key points

  1. The stigmatisation of people with HIV can be fuelled by racial, homophobic and drug-related prejudice
  2. Prioritising prevention messages for those considered high risk of HIV infection can add to the stigmatising effect
  3. Nurses can reduce stigma associated with HIV by acting as role models, providing non-judgemental care, and challenging prejudice
  4. People diagnosed with HIV are at risk of developing mental health problems, such as depression and suicidal thoughts
  5. It is unrealistic to rely on antidiscrimination legislation to counter stigmatisation of people with HIV 

Box 1. HIV Facts and Figures

  • Around 86,500 people were living with HIV in the UK in 2009;
  • Around a quarter of those infected were thought to be unaware of their diagnosis;
  • More than half of HIV diagnosed individuals accessing care in 2009 were infected via heterosexual sex;
  • 41% of the estimated total and an estimated 42% of new infections in 2009 were acquired through sex between men;
  • The highest proportion of recent infections in heterosexuals was in females aged 15-24 and males aged 25-34;
  • Half of adults diagnosed with HIV in 2009 were at a late stage of infection

Source: Health Protection Agency (2010)

Introduction

In 1998, Gugu Dhlamini was stoned and beaten to death in South Africa by people from her township community after speaking openly about her HIV status. Her death was largely due to ignorance and prejudice, and the stigma attached to HIV infection. While the idea that this could happen in the UK may seem unthinkable, ignorance and prejudice surrounding HIV is very much alive. Although HIV treatment has been widely available in the western world for the last decade, the stigma surrounding it still exists.

Nurses have an important role to play in helping to reduce stigma associated with HIV: specialist HIV nurses by acting as role models and raising awareness, and general nurses by providing non-judgemental care, using universal precautions, and challenging prejudice.

Stigma and HIV

The National AIDS Manual (2008) says: “People who are stigmatised are marked out as being different, and stigma is often attached to things which are seen as embarrassing or a danger. Stigma can be used as a way of denying dignity, respect and rights to some members of society, and can result in people being isolated or abused. It can lead to discrimination, where people are treated less well because of a characteristic they have.”

HIV stigma is particularly complex, fuelled by racial, homophobic and drug related prejudice and discriminatory behaviour. It is also a way for people to cope with irrational fears of catching the condition (Kelly, 2006). HIV is also a self-stigmatising condition. People with the virus often report feelings of guilt and self-loathing, internalising society’s views that they are at fault or deserving of retribution for risk taking and “immoral behaviours” (NAM, 2008).

Public messages

Messages from public health campaigns in the 1980s and 1990s were stark: if you catch HIV, you will die. According to the international HIV and AIDS charity Avert (2011) the language and imagery used in these campaigns also contributed to subliminal messages, with HIV regarded as:

  • A punishment for immoral behaviour;
  • A crime with innocent and guilty victims;
  • A war on a virus which must be fought;
  • A horror in which infected people are demonised and feared;
  • As otherness, where the disease is an affliction of those set apart. 

This approach was designed to frighten people into recognising the risk associated with HIV infection, but it also sowed the seeds of irrational fear. People did not fully accept the additional message that the infection could not be passed on through day-to-day contact, a message that continues to be poorly understood.

Myths surrounding HIV can contribute to the stigma attached to the condition. According to the NAM (2008) “The stigma associated with HIV is used to maintain some of the inequalities that already exist in society.’’

Targeted prevention messages 

HIV has been specifically associated with certain “risky” lifestyles and behaviours, such as homosexuality, drug addiction and prostitution.

The reported higher prevalence of HIV in some communities – such as black African communities and men who have sex with men (MSM) - makes it necessary to pay particular attention to these sections of the population. The National Institute for Health and Clinical Excellence has issued draft public health guidance on increasing the uptake of HIV testing among these groups (NICE 2010a; NICE 2010b); the final guidance is due for publication later this month.

Although it is well intentioned and may be necessary to prioritise prevention messages for those considered to be at high risk of infection, messages that only target certain communities can bring their own problems. Theycan add to the stigmatisation of people in these groups and make them reluctant to admit risk or reveal their HIV status. This targeting may also give people outside these groups a false sense that they are not themselves at risk of HIV provided they avoid the targeted groups.

Tackling stigma

Tackling stigma associated with HIV is vital because it can undermine attempts to stem the epidemic of HIV and AIDS worldwide. United Nations secretary-general Ban Ki-Moon (2008) has described stigma as the most important barrier to public action and a main reason why many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment.

If people fear being shunned by family, peers and the wider community, they are unlikely to come forward for testing, or hide the condition and avoid seeking support for long periods.

Preventing HIV

Denial often goes hand in hand with discrimination, and many people deny HIV exists in their community. Community inclusion projects, such as Celebr8 in Milton Keynes, should focus on changing attitudes to combat ignorance celebrates diversity in the community, with the message that everyone is equally valuable to society.

A national campaign, emphasising whole-society compliance with prevention messages is also needed, and the following areas need to be addressed:

  • Religious groups: HIV is often associated with alleged “morally unacceptable practices” leading to fear of judgement and exclusion. Working with religious leaders can help them understand HIV and related issues.
  • School and workplace education: Regular reinforcement of health promotion messages about HIV will prevent the “collective amnesia” about the condition.
  • HIV champions: Highly visible, HIV-positive role models can help break down stigma, yet there are very few in the UK. Involving people living with HIV in combating stigma could lead to a greater understanding of their needs and the negative effect of stigma.
  • Clinical education: This should include updates to enhance healthcare professionals’ knowledge and change negative attitudes. If people with HIV think they will be treated as “unclean” they will avoid seeking help, so they will not receive treatment or education to prevent onward transmission.
  • Universal precautions: The importance of practising universal precautions must be re-emphasised. It Infection with HIV, or any other blood borne virus, so it makes no sense to take precautions only with those known to be HIV positive, particularly since a quarter of people who are HIV positive do not know they have the virus;
  • Opt out HIV testing: One of the major successes of recent years has been in the shift towards opt-out testing in maternity services, leading to greater ‘uptake’ and allowing HIV status to be known before delivery. This has resulted in major reductions in vertical transmission (mother to child). Wider testing on this basis in healthcare settings could reduce the numbers of people who do not know they are HIV positive, and assist in reducing onward transmission.

Conclusion

Although it is unrealistic to think the stigma associated with HIV can be eliminated, we can reduce its effects by challenging misconceptions and judgemental attitudes. This will improve the quality of life of those living with HIV, and is likely to increase the uptake of both screening and treatment and people with HIV are also more likely to receive and act on information about preventing onward transmission. This has both human and financial benefits as the cost of preventing HIV transmission is considerably less than the cost of treating the condition. The message going forward must be “less blame, less shame, less stigma, less HIV”.

Nurses can only help to reduce HIV stigma if they are well informed about the condition. Specialist HIV nurses have increasing workloads, but in collaboration with other agencies that have a knowledge of and connection with the communities in which they work- could contribute to training. Well informed and compassionate nurses could do much to educate the public, and counter self-stigma in patients. 

  • 33 Comments

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