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It’s good to talk?

In July last year the Children & Young People HIV Network held a residential for 25 young people, all infected with HIV and aged between 13-18 years old. The aim was to find out what it has been like growing up with HIV in the UK. The young people came from all across the country, most of them knew no-one else, and yet they travelled for hours on trains to have the chance to meet other young people ‘like them’.

he young people talked about and shared many things, and the insight they offered was invaluable. One area that stood out was that around disclosure and talking about HIV. Much has been written about telling a child about their HIV status and although there is still discussion, the general agreement is that a child needs to know their HIV status before they reach adolescence.

The focus is on working towards the ‘naming’ of HIV to the child, and yet for that child, this is where their journey begins. As an HIV positive 15 year old succinctly put it:

“It doesn’t matter where you’re told [about your HIV status] and who tells you – it doesn’t change the information. You’ve still got HIV and you’ve still got to live with that.”

A child’s HIV status is complex, as it more than often is also the Mothers HIV status. After learning of its status, a child will be told to not share this
information with anyone, talk of ‘private’ or ‘family’ information is often used.”

A recent audit undertaken by the Children’s HIV Association (CHIVA) of paediatric HIV practice on talking to a child about their HIV diagnosis found that most children are told by the age of 12.
However, although children seem to cope well, parental unwillingness to disclose was by far the most common reason for delays in the process of disclosure.

The audit found that parents frequently refused to allow the child to have an open discussion about HIV or were concerned that either the child will disclose to others, or that the child will learn that their parents are also infected with HIV.

A child’s HIV status is complex, as it more than often is also the Mothers HIV status. After learning of its status, a child will be told to not share this information with anyone, talk of ‘private’ or ‘family’ information is often used. But most of the young people reported not being able to talk about HIV at home. They felt the topic was ‘off limits’ because siblings are unaware or that it reminded a parent of bereavement or that it just was not to be spoken about.

HIV is a sexually transmitted disease, and good communication and negotiation around safer sex are essential in preventing further spread of the virus. Negotiating safer sex can be difficult, and the continual rise in teenage pregnancy figures suggests young people in the UK are not so good at this. The government is now suggesting strategies such as the hormonal injections for young people, which will stop pregnancy, yet does nothing to protect the young person from STIs. These sorts of strategies do nothing to support and promote young people feeling more able to discuss contraceptive use and could make negotiating condom use even harder.

HIV infected children are told not to tell anyone. They are told this is a family issue and yet it is not talked about in the family, and then they are told that some people have been prosecuted for knowingly infecting another with HIV, and so they must always use a condom, and ideally, tell their sexual partner beforehand. This is a minefield for this group of young people and has led to confusion, completely inappropriate disclosure, decisions to ‘just not get involved with anyone’, or being involved with someone, knowing you should talk about it, but feeling completely unable to do so.

“The audit found that parents frequently refused to allow the child to have an open discussion about HIV or were concerned that either the child will disclose to others, or that the child will learn that their parents are also infected with HIV.”

“I have a boyfriend but I haven’t told him. I love him and I want to tell him, but I’m just too scared and I don’t know how”.

All this concentration on HIV and sex also overlooks friendship.

Adolescence is the time where children move through to adulthood. The child becomes more independent, friends start to replace family as the people you share things with, they support you and they understand you. Talking about HIV is not just something for the bedroom; these young people actually need at some point to tell some of their friends.

“When can I tell my friends? Are they trustworthy?”

In adult services, a person being told a positive HIV diagnosis should have a conversation about talking to others and how sharing this information will lessen the burden, but to think carefully about who to tell and how to do this as once told, you can not get this information back. But these children and young people often carry the burden alone, and the people that do know may refuse to talk, and more importantly, may not be the people these young people want to talk too.

HIV positive young people have predominantly been brought up in an environment of ‘secrets’. The impact of being told your diagnosis and then being told not to tell anyone has meant for some in this group, they feel unable to even start to consider talking to others about this. It does present a difficult dilemma for practice. Confidentiality is important in a climate that discriminates against those with HIV, yet how does one balance confidentiality with ensuring that HIV positive young people are, when ready, able to talk to both their peers and sexual partners about this?

“I’m sick of all the secrets, sometimes I just want to tell everyone and get it out in the open.”

And we must not forget the parents; they also need support through this. It seems clear that it is good to talk, but that both real and perceived stigma silences families and impacts deeply on these children’s lives and development. Do we really want the next generation of children living with HIV to inherit the silence? Isn’t it time to talk? PN

A full report on the residential can be found on www.ncb.org.uk/hiv. The findings will be used to support new guidance being drawn up for working with families in a medical setting on talking about HIV.

A survey of the practice of disclosure of an HIV diagnosis to children in the United Kingdom and Republic of Ireland. (CHIVA, 2008) Sheila Donaghy, Michel Erlewyn-Lajeunesse, Diane Melvin and Vanessa Garratt.

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