HIV Stigma Rules?

posted: 22/02/2011

You can plainly see HIV stigma and fear in action when eight in ten young people know  that HIV cannot be passed on by sharing mugs, yet three quarters of 12 to 18-year-olds say they still wouldn't share a mug with someone with HIV.

That’s HIV stigma and fear.

Even when people know the facts we often let our fears and prejudices rule.

Two new HIV knowledge and attitudes studies

Two recent studies, the first of teenagers in London from the HIV family charity Body and Soul, and the other of adults in the UK from NAT (National AIDS Trust), both show HIV ignorance and prejudice in action – and this seems to be worsening in recent years.

London teens reveal rejection

A recent study of London students aged 12-18 reveals a significant gap between what young people know about HIV and how they would behave towards someone living with HIV. While the majority know how HIV is passed on, many said that, despite this, they would not share a cup, shake hands with, or kiss someone who is living with HIV.

Social stigmas also rule: many young people said they would worry about the emotional strain and hostile reactions from young people around them, if they had a relationship with someone with HIV.

Despite all this, young people are keen to know more. 41 percent felt they had received too little information on HIV, and more than half (54 per cent) said they wanted to learn more about HIV.

Attitudes to HIV among 12-18 year olds in London: Report to Body and Soul 

The research highlights the contradiction between what young people knew about HIV and how they said they would behave:

• While 81 per cent of young people knew that HIV could not be transmitted by sharing a cup, only 27 per cent of them went on to say that they would drink from the same cup as someone who they knew was HIV positive.
• Likewise, while 69 per cent of young people knew they could not get HIV by kissing, only 24 per cent of them went on to say they would kiss someone who they knew was HIV positive.
• Even some of the youngest people in the sample - 12 and 13 year olds - said they would not share a cup with, shake hands with or kiss someone who they knew was HIV positive, even if they knew it was not possible to get HIV that way. Crucially, this shows that HIV-related stigma starts at an early age.

Schools are the most important place for students to learn about HIV:

• Young people tended to feel that teachers were the most trustworthy source of information on HIV, suggesting that schools are a good route of communicating with young people on the topic.
• Communication by teachers also appears to have the potential to achieve impact: those who said they had been taught about HIV in school not only had higher levels of knowledge about how HIV is transmitted but also - to some extent - appeared to be less prejudiced towards people with HIV.
• Importantly, almost 1 in 3 of the young people consulted said they had either not been taught about HIV in their school, or did not know if they had.

Attitudes to HIV among 12-18 year olds in London

Rising Adult HIV Ignorance
HIV ignorance among adults seems to be rising, but two out of three adults say more needs doing to tackle HIV hate and prejudice in the UK.

• one in five adults do not know HIV is passed on through sex without a condom between a man and a woman
• Only three in ten adults (30%) can correctly pick from a list all of the ways HIV is and is not transmitted
• Rising numbers wrongly think spitting and biting pass on HIV
• 1 in 5 say someone in their family getting HIV would damage their relationship with them
• More than two thirds of British adults (68%) agree more needs to be done to tackle prejudice against people living with HIV in Britain.

NAT (National AIDS Trust) has just published the findings from its fourth HIV public opinion poll HIV: Public Knowledge and Attitudes 2010, carried out by the opinion polling organisation Ipsos MORI, amongst adults in Britain.
The report reveals a worrying rise in HIV ignorance over the past ten years.
 

Dispelling the transmission myths and misconceptions
The British public is confused about how HIV can be passed on. One in five people weren’t clear that sex without a condom between a man and a woman, or between two men are ways of getting, or passing on HIV. Public HIV knowledge seems to be falling, because around 1 in 10 more people knew this ten years ago.
 

Only three in ten people (30%) correctly picked all the ways HIV can and cannot be passed on.
 

One in 10 people believe the impossible – that spitting or kissing passes on HIV. This result is twice as bad as ten years before.
 

One in six people (17%) don’t feel they know enough about how to prevent HIV transmission during sex.
 

African and Carribbean people need more

 Many African and Caribbean communities know less about HIV because they shy away from discussing it. The NAT survey shows that people from ethnic minorities are more likely than white people to say they 'don't know' the routes of HIV transmission.
In addition Asian and particularly African and Caribbean people 'are also likely not to mention sex without a condom between two men as a method of transmission.'
In the survey, 46 percent of African and Caribbean people polled did not mention sex between two men compared with 20 percent of whites.

Life with HIV
Encouragingly, most adults (70%) know people getting HIV won’t all die within three years, but 1 in 10 do think this. Two out of five wrongly believe that HIV test results aren't reliable until three months after HIV infection, and nearly half wrongly think pregnant mothers with HIV will always have babies with HIV. 
 

People need a better grasp of the facts because knowledge curbs HIV fears that can discourage people from taking HIV tests and telling others about having HIV. More than two out of five adults want to know more about life with HIV here today, and more than half of all young people under 25 want to know about HIV life.
 

Deborah Jack, Chief Executive of NAT (National AIDS Trust), told us:
 

‘As the number of people with HIV in the UK approaches 100,000, it is crucial for everyone to understand the facts around how HIV is passed on so they can protect themselves and others. Many people are unaware of the basics such as using a condom to protect themselves, whilst myths such as transmission from kissing and spitting are still perpetuated.
 

‘One of the most concerning aspects of this survey is the fact that knowledge of HIV transmission amongst the general public has declined significantly over the last ten years. With the number of HIV infections in the UK still going up, one in six people feeling they do not know enough about how to prevent HIV transmission during sex is simply too high. When it comes to protecting yourself from HIV infection, knowledge is power.

'The Government must take the lead in acting to improve understanding and so protect public health.’
 

Support or stigma and prejudice?
Most of the public have a supportive attitude, with two thirds (67%) saying they have sympathy for people with HIV and three quarters (74%) agreeing people with HIV deserve the same level of support and respect as people with cancer.
 

However, a significant minority of people continue to hold stigmatising and discriminatory views.

One in ten adults say they have little sympathy towards people with HIV, and this rises to three in ten if people got HIV through unprotected sex. Since almost everyone with HIV (95%) got HIV through unprotected sex, this rate of public blame and rejection looks worrying.
 

Friends, workers and relations
Feelings are affected by people having HIV. One in five people felt HIV would damage their relationship with a HIV positive family member or neighbour. At work, although two thirds agree they would be comfortable working with someone living with HIV, more than one in ten admitted they would be uncomfortable working with that person.
 

‘Tell the workers too’
Over a third of people think employers should tell other workers that one of them has HIV. The idea that workers have a ‘right to know’ is pointless as protection, because there is no risk of HIV transmission at work. This 'right to know' demand shows how HIV stigma undermines HIV workers’ rights to privacy and confidentiality.
 

Most know about HIV stigma
Two thirds of the public believe that there is still a great deal of stigma in the UK today around HIV and a similar proportion agree it is right there are laws to protect people with HIV from discrimination and that more needs to be done to tackle prejudice against people living with HIV in the UK.
 

Women are keener than men to tackle HIV prejudice, with 73% of women wanting to see action on this problem, compared with 62% of the men.
 

Time for government action

Deborah Jack, Chief Executive of NAT (National AIDS Trust), concludes:
‘Whilst HIV treatment has advanced rapidly in the last ten years, knowledge and attitudes have sadly not kept pace – resulting in stigma and discrimination.
 

'In addition to improving knowledge of HIV, intensive work also needs to go into tackling the often deep-seated judgments and beliefs held about HIV and the people affected.
 

'The Government made a concerted and effective effort to tackle this stigma in mental health, and now it is time for HIV to be addressed in the same way.’
 

HIV - Public Knowledge and Attitudes 2011 - full report and data tables

HIV ‘Inbetweeners’ and ‘Misfits’

posted: 21/02/2011

Life in my shoes challenges the stigma and prejudice around HIV and corrects misunderstandings about HIV transmission and treatment.It's a new campaign aimed at teenagers and families affected by HIV, organised by the London family HIV charity Body and Soul.

Life in My Shoes is fronted by actors from the popular television shows The Inbetweeners and Misfits, to appeal to teenage interests, and it offers young people exciting opportunities.

Could you be their star?
Life in my Shoes is a film which will be distributed to secondary schools. The campaign has begun with a competition to find a young person to star in the film. There’s a short script about HIV misconceptions and prejudices. You upload your auditions to the online gallery.

Help spread the word about Life in my Shoes - visit the website, and encourage young people to join the competition. The competition is for all between 14-21 who have stars in their eyes to be on screen, whether or not your life has been affected by HIV.

You can audition and star without saying anything about whether or how HIV affects you.

Young people with or affected by HIV should check the other wannabe stars in the audition gallery. It is a treat to see young people, who may not have thought much about HIV previously, reading the script and showing support for young people whose lives are touched by HIV.

Audition and upload

Upload you audition using their script before Thursday 17 March – St Patrick’s Day
 

Life in my Shoes  is a response to findings from research commissioned by Body & Soul and undertaken by OPM into the attitudes of teenagers to HIV.

Download their report Attitudes to HIV among 12-18 years olds in London 
 

HIV Teenagers to Adults

posted: 21/02/2011

Older teenagers with HIV are our HIV pioneers because they are the first generation of young people growing up with HIV. Being the first at anything is often exciting, but with HIV it can be much less fun and more of a struggle.
 

Making the change better

The Children and Young People HIV Network are working to make it easier to move from being a teenager with HIV to being an adult with HIV.

Young people with HIV have two main challenges 

• growing up from a child to adult with HIV (e.g. beginnning sex and relationships with HIV)
• moving from children's HIV clinic and education, into adult HIV services and employment or claiming benefits with HIV.

The Children and Young People’s HIV Network have now finished checking all the expert articles and books about changing from child to adult with HIV in a ‘literature review’.

They looked to learn lessons about improving the change from child to adult, including learning from experience with other conditions like diabetes and epilespy.

The HIV child to adult change literature review is here 

The review 

• has statistics about young people with HIV in the UK
• finds existing policies and guidelines for the child to adult change
• looks for useful lessons from other longterm conditions, like diabetes
• considers the needs of carers and family
• considers rural areas with very low numbers of young people with HIV.

Professionals tell us

Last week we pointed out the useful article where HIV health workers describe helping teenagers to make the change from child to adult with HIV, which is in the 200th issue of HIVTreatment Update.

Teens talking life with HIV
Two young people making these changes talk about their own lives. JD Bailey (20, female) talks about growing up with HIV, and Max, (19, male) talks about telling others about HIV
 

‘Transition of care from a paediatric to adult setting is not specific to HIV … However there are important differences … with HIV which may make this process more difficult’  Lyall, 2007.

Manchester Event - HIV and Young Carers

posted: 27/01/2011

Young carers and families affected by HIV are under the spotlight at an event in Manchester, in early February.

The Children's Society are running a training and consultation event Affecting Change for Families: Improving services for young carers and their families affected by HIV
on Friday 4th February 2011 at the famous Midland hotel in central Manchester.

No-one is sure how many children in the UK are caring for someone in their home with HIV. It is estimated that there are between 15,000 to 20,000 young carers of people with HIV.

This free event aims to ensure those involved in providing services to families affected by HIV including service managers, policy leads, and senior practitioners in health and the Voluntary and Statutory Sector are equipped with the latest guidance and are able to identify and respond to when a children and/or young people is taking on a caring role and to address wider family issues.

The event

• Find out about the Children's Society’s young carers and families HIV work, funded by the Elton John AIDS Foundation
• Learn about the issues faced by young carers and their families affected by HIV
• Obtain new Good Practice guidance in multi-agency working with families affected by HIV
• Inform national practice with your own expertise.

Booking form

More information and bookings

HIV and Teenage Pregnancies

posted: 26/01/2011

Behind the good news that 58 London teenagers with HIV successfully gave birth to 66 babies, there’s another story.

This is a saga of sex education that isn’t working, major gaps in HIV prevention, little or no use of contraception, unplanned pregnancies, vulnerable teenagers and sexual abuse, domestic violence, undiagnosed HIV, late diagnosis, further pregnancies after the birth, and complex psycho-social problems. 
 

We learn this from the first British study to look at pregnant teenagers with HIV, in the latest issue of the British HIV Association journal, HIV Medicine.

Over the seven years up to 2007, 12 London hospitals found 58 teenage (13 – 19) women with HIV who became pregnant. 66 babies were born live to the 58 mothers and only one baby developed HIV. The mothers (and the babies) have done well and that is what the study was looking into.
 

Gaps and needs

But the study uncovered evidence of significant gaps, and exposed teenagers’ needs and some of the life problems that can help explain these pregnancies, and how HIV pregnancies and HIV transmissions to vulnerable teenagers might be avoided.
 

The young women here faced “difficult medical and social circumstances,” used condoms infrequently, and a quarter became pregnant again within one year. Other studies have shown many young people with HIV have complex psychosocial problems, take high levels of sexual risk and have significant recreational drug and alcohol use. This study found this too.
 

11% of the new HIV diagnoses in the UK are young people aged 16 to 24.

Ethnicity
Four out of five pregnant teenagers have ethnic minority backgrounds:

• Black African, 59%
• Black Caribbean, 17%
• Other ethnicities 10%
• Only 14% were white females.

Almost three quarters (72%) were born abroad.
 

When infected?

One woman was definitely HIV-positive from birth, but as many as 43% of the women might have got HIV as babies from their mothers. These young women were diagnosed with HIV in their teens, but after they begun their sexual lives, so we don't know how they became HIV positive. 
 

Late diagnosis too

Some of the young women were diagnosed at a late stage of HIV : 5% of the young women had already developed symptoms of HIV illness, and 9% had an AIDS-defining condition.

However, most of the women (87%) had no HIV symptoms.
 

Almost two-thirds of the young women (63%) were diagnosed with HIV during the normal antenatal checks, and the others were diagnosed before they became pregnant.
 

How infected?
How might these young women have got HIV?

• 1 (but possibly 25) infected from mother to baby 
• 42 (63%) migrated from a high-HIV-prevalence country (so possibly mother to baby, possibly sexual, possibly through infected blood or tissue)
• 24 (36%) sexually through a ‘high-risk’ partner, or someone with HIV

Most (92%) were sufficiently sexually active before they became pregnant to have had a sexual health screen the year before, and 45% have had another sexually transmitted infection.

No condoms or contraception
Most of the pregnancies (82%) were unplanned, and only four were taking anti-HIV treatments when they conceived.

• Only 1 in 3 used condoms, and often condom use was inconsistent 
• 2 out of 3 didn’t use any contraception.

2nd pregnancies

Despite this, the hospital notes show that less than half (43%) of the new mums were advised about contraception after they had their baby, and not surprisingly 1 in 4 of the women then had a second pregnancy within a year. Contraception advice (and having a baby as a positive teenager) is not enough to prevent conception again. 47% of the second pregnancies followed contraception advice, 88% of the second pregnancies were unplanned and 12% ended with a termination.
 

Life problems
“Significant and complex psychosocial problems” were very common, for example 

• Almost half (45%) were sexually abused
• 58% had housing problems
• 63% had financial problems : only 8% were in paid work, the rest were unemployed (54%) or students (38%).

94% took anti-HIV treatment during pregnancy and for most (81%) this was to prevent mother-to-child transmission of HIV. By the time of the birth 62% of women had an undetectable viral load.
 

Good results for mums and babies

The investigators emphasise that despite their vulnerability and difficult social and medical circumstances, these HIV-positive teenagers had a “favourable” result – they did well themselves and their babies are fine.
 

The authors say the good results were due to the “multidisciplinary care the patients received.” This was provided by expert teams working closely together at major London hospitals - HIV physicians, obstetricians, paediatricians and specialist midwifes.
 

They say their study identifies “a need for more effective strategies in the management of HIV-infected teenagers with particular emphasis on sexual and reproductive health.” To meet these needs, the authors call for the establishment of “a one-stop shop including HIV care, sexual and reproductive health input and psychosocial support in an appropriate environment provided by skilled staff in a sensitive and nonjudgmental manner.”
 

UK Guidance Managing the sexual and reproductive health of teenagers with HIV

Acute HIV prevention needs of vulnerable teenagers

While this study says nothing about HIV prevention needs, (they were studying how well the the care for HIV positive pregnant teenagers and babies worked), it is very plain that these pregnancies, and teenagers becoming HIV positive exposes a major failure to meet HIV prevention needs.

At least a third of these teenage women were sexually infected with HIV. 

Almost all of these teenagers were sexually active in the year before they became pregnant, when they may not yet have got HIV. 92% of them had a sexual health screen in the year before they became pregnant. Almost half have had an STI.

Four out of five have an ethnic minority background; three quarters were born abroad and are migrants.

Most have complex psycho-social needs and are likely to be in contact with other services.

Target vulnerable teens for intensive HIV prevention

All services providing sexual health checks and contraception services to teenage women matching this profile should particularly target HIV information and support services to meet those needs.

The teenagers' male partners are invisible in this study - some must have HIV. There is a risk that those males without HIV might get HIV from their girlfriends, because few of the males are using condoms consistently.

We know nothing about their male partners' ages, ethnicities, whether they are migrants, use of sexual health services, or whether they are also vulnerable because of complex psycho-social problems. We need more information before we can meet the male partners' HIV and contraception support needs.       

Source, with reference

Related news - Unplanned pregnancies in teenagers infected from their mothers