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Telling children & parents about HIV+ status

Telling parents was fraught with difficulties for many people we talked to. Although parents could sometimes be a great source of support, relations with parents were not always straightforward, and people worried that parents might react badly to the news. One man had a friend whose black African parents had 'disowned him' when he told them of his HIV status.

 

He had a difficult relationship with his parents while growing up, but it has improved over the...

He had a difficult relationship with his parents while growing up, but it has improved over the...

Age at interview: 37
Sex: Male
Age at diagnosis: 24
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To be fair they'd really been fantastic, they had always been there for me. I just hadn't always recognised it that they were there for me. I always felt in my head that actually there what judgements about me being gay, there were judgements may be about me being HIV positive, which actually there weren't, but my mind told me that there were. And that was my negativity not theirs and that was the difficulty. What they weren't particularly good at was expressing themselves, and so because they didn't express themselves, I always thought that they were thinking the worst, whereas they weren't. They just weren't very good at expressing themselves. Which is exactly the way I was of course. So you know parents who don't express themselves very well, it is kind of natural that the son is not going to end up growing up being very good at it. And what happened of course as I started to develop the where with all to explain how I felt and talk about what was going on with me, and talk about those things with them, is that they have actually changed with me, and they're very different now than they used to be. In terms of the things that they will talk about' in terms of being physically affectionate.
 

People described all kinds of communication difficulties with their parents which made it difficult to tell them about their HIV status. For instance, one man said he was protecting his mother when he promised her he would never tell his father about his HI: 'So my father went to his grave not knowing my status.'

 

He would only tell his parents about his HIV only if he was ill, but did tell his sister. (Read...

He would only tell his parents about his HIV only if he was ill, but did tell his sister. (Read...

Age at interview: 40
Sex: Male
Age at diagnosis: 37
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They're the one bunch of people I haven't told, my parents. Partly because I couldn't face the faffing. They came down… When I was first ill, they came down. And I had to… And I just wanted to sit and talk. And… But my mother insisted on cooking a huge meal and having a proper Sunday thing. And we had to get the table out. 

And when they'd gone I spent 2 days in bed. So when I was in hospital next time, I said to them, 'Don't come down.'

I, I just didn't want to see them. I didn't want anybody who…like, like were getting in the way. I mean I've got better now. And I don't see why I should lump my worries onto them in their old age. They… It's not, it's not their problem. 

If it gets to be a position where I am ill or, or had a terminal illness, then that's, that's the time to tell them. I don't see why I should dump on them… I've told my sister. Because I thought I should tell somebody. And I also needed to talk to somebody.

Some people were concerned about unnecessarily worrying or hurting parents who may be unable to understand and cope with the news: 'I haven't told my mum because I think it will break her heart,' said one man. 'If they hear that their son is having it (HIV), then it might even kill my old mother,' said another man. Others pointed out they did not have a good relationship with their parents anyway, and so there was no point telling them. With effective treatments and good health, some people did not feel the need to disclose to their parents. One man said: 'You tell your friends more than you tell your parents… they're the ones that are going to be around 24/7 not your parents.' Still for other people, telling parents was very important to them.

 

He has not told his parents about his HIV status to avoid hurting them, but he wonders if he...

He has not told his parents about his HIV status to avoid hurting them, but he wonders if he...

Age at interview: 38
Sex: Male
Age at diagnosis: 24
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But I never told [my parents]' and so they were wonderful about me, they love and accept [name of current partner] but I never told them about my HIV status. And the reason for that I tell myself is because I didn't want to hurt them and that is true because I didn't want to worry them that you know' one of your children pre-deceasing you, that was' and you know. And I thought I'll wait until I really absolutely do have to tell them and there was a time in '95 I thought how am I going to do this. And then treatment came along and I just, you know, the worry is that' I mean I'm offered advice from various friends that you should tell them, no I think you're right in' But my instinct is not to tell them, why impose this worry onto them. That no matter what I told them about therapy, treatments, they'd just see HIV, AIDS, death. Then another side of me thinks am I really doing this because I am actually deep down quite ashamed of myself?

I think if I had been diagnosed with and treated for a cancer, which would probably' would now probably lie in remission with good treatment for a lifetime, I wouldn't worry about them finding out or telling them. I think that is definitely something to do with it. No matter how unPC this might sound and things like that, and no matter how much work I've done on this or how much I've lived through it, there is still part of me which is ashamed of having HIV. 

 

He wanted to tell his parents about his HIV and he prepared them for the news.

He wanted to tell his parents about his HIV and he prepared them for the news.

Age at interview: 39
Sex: Male
Age at diagnosis: 34
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It was a' a few weeks after I'd been diagnosed, I decided who I was going to tell. And my family was top of the list, and I basically set aside a weekend, I went to spend a weekend with my parents in Paris. I spent most of the weekend just socialising with them and doing things I' you know, sort of walking around Paris and' And once we had kind of re-established a bit of a relationship I sort of' I told them and' I wanted really, I wanted to' to' first of all I wanted to let, let them see that I was all right, before I told them. So that's why I didn't' I let sort of a couple of days go and then at the end of second day I, I did tell them. So, that went well.

When it came to telling children about HIV and sexual health in general, people said that HIV education could start from a young age at school and at home: 'I am always feeding them with the information I get,' said one mother. People said not to leave education too late since children themselves can become sexually active in their early teens in the UK, and so need to be educated. 

Parents worried about when and how they should tell their children about their HIV. Most said it was important to wait until they felt their children were psychologically ready - perhaps in their early teens - to cope with hearing that their parent(s) had HIV. Parents were also concerned that if the children were not told they might overhear adults talking about HIV, or pick up that something was wrong, and become confused and upset. On the other hand, if children found out when they were very young they might tell other children at school and so become the target of bullies.

Telling a child that their parent has HIV was difficult, but sometimes parents also faced having to explain that the child was HIV positive also. This was particularly agonising for parents.

 

He was struggling with keeping HIV secret and how to tell his child that the whole family is HIV...

He was struggling with keeping HIV secret and how to tell his child that the whole family is HIV...

Age at interview: 40
Sex: Male
Age at diagnosis: 35
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What happens when he gets to those stages? Adolescence and he's a teenager. It's going to be very hard for him to cope. I don't know how he's going to cope, we don't know. 

In a sense we almost, hopefully this psychiatric thing we're going to go through may help but, it's one thing that we've sort of pushed under the carpet at the moment. None of us know what to do we… just, are just, totally snookered. We don't know how to handle this child when he starts asking the questions. Fortunately he hasn't started asking the questions yet. And fortunately as we know and as... professionals know... I know he can't affect another child by just playing with them or swimming with them. 

So we don't have to tell other parents that, that he's got his problem because we're not putting their children at risk so that's OK. But the thing of, I mean he always has to, for example as I said earlier, he has to be with us all the time because we have his, provide his medication for him all the time. 

Well he's getting to the age where he'll want to go away you know what I mean like other kids, want to. I want to be away from me for a week, go and sleep over for three days, he can't do that. And how do you solve those issues when those issues start coming to the fore when he's a... Our, you know his grandmother says, 'Why don't you leave him here?'

I mean sometimes they would say to us, like in the summer holidays, [grandparents] they say to us why don't you leave him here? We would love to, in any normal circumstance we would have left him in Africa for a month to be with his grandparents to be with his uncles, to stay there. And we could come here and actually have a break from him for, for a month and, you know, we can't. Because he has to have his medication, he has to come back, he has to come back, back with us, he can't stay, he can't stay with them. 

People pointed out that support organisations and professionals can help in working out how to tell children. When people did tell their children, it could be a support: 'They know whenever I am not feeling well, they know the reason why, so it's a relief for me.' Another mother said of her older teenage children: 'They remind me “have you taken your medication?"'

 

Has decided to gradually introduce the topic of her HIV status to her child. (Read by an actor.)

Has decided to gradually introduce the topic of her HIV status to her child. (Read by an actor.)

Age at interview: 33
Sex: Female
Age at diagnosis: 27
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Telling my child about my HIV, it worries me, but the way I've chosen to deal with it, the way I intend to deal with it, is to start to explain to him as early as possible so it's not so much of a shock. I know a few women are really scared of telling their children and they don't want to tell their children at all. 

But children can hear things and they can pick things up very easily, and other… from other members of the family they might start talking and a child just hears what they say. And they start to suspect that something isn't right and they might start acting up in their behaviour, yeah. So I've decided that as early as possible, I'll start to hint the fact that I've got a medical problem. I won't tell him exactly what it is. 

Again, that's because he might go to the playground and just say it out you know, and then he'll be discriminated against and I don't want that, yeah… Some [women with HIV] have told their children quite easily, they've just told their children when they were diagnosed and again, some have not. 

Yeah, and the ones that have not are really, really scared you know. And it's only because they care for their children, they don't want them to be hurt or whatever so they think it's better. 

 

Children should be told about your HIV status when they are mature enough to deal with the news. ...

Children should be told about your HIV status when they are mature enough to deal with the news. ...

Age at interview: 32
Sex: Male
Age at diagnosis: 27
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You know disclosing to children it would not really be a priority. But if one feels that it's something that is helpful then you, you can go ahead and tell them. 

Because you know you, you are looking at you know them having a tender mind and also you must think how they will handle it. Just like one of them he mentioned maybe they could pass it over to other friends. But even themselves because you see, they have still education and receive the education which still portrays this illness as a dying illness. 

So if… in apparently a child's mind will know that, my mummy or daddy may be dying. I think it weakens their moral and spiritual health in, mentally and emotionally. They will actually not perform very well in school setting. Because if you look at child psychology, you will discover that they've got different stages in which they can handle certain things. But in a big situation like this one, whereby even elder people like me, who has it , cannot handle it very well, I, I don't see how… a child can, can really handle it… But if disclosing is one way in which you can strengthen them, then do it.

Last reviewed May 2017.

Last updated September 2010.

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