At Body & Soul we understand that HIV affects the whole family and we treat every member of the family, regardless of their age or their HIV status, as an individual with different but equally important needs. When children first find out about HIV it can be a very difficult time and can impact on every member of the family.
Everyone will need support both individually and as a whole family in order to make the process as positive and smooth as possible. It’s important to spend time planning and thinking through the process of naming HIV in advance and Body & Soul is here to make sure that you are not alone at this time.
In our experience, talking to children and young people about HIV can be a generally positive experience for families. Talking about HIV can help to build trust and openness. It can also be a relief for parents concerned about keeping
HIV a secret and to children who may have been worrying about an unnamed health condition. Naming HIV to children and young people in an unplanned or unintentional way may present both immediate and longer-term difficulties so we encourage you to take your time and will support you in making a plan.
If you and your children are members of Body & Soul, or are considering becoming members, you will benefit from talking to other parents who have already gone through the process of naming HIV to their children as well as professionals with many years’ experience of guiding families through the naming process.
A combination of workshops and especially tailored one to one sessions will provide the opportunities to ask questions, hear other people’s experiences and
share concerns and strategies. We can also arrange for you to hear from young people about their experiences of how they found out about HIV – what worked well, what didn’t, what helped and what made them scared and confused.
Young people living with and affected by HIV at Body & Soul have often expressed that finding out about HIV gave them a greater sense of control, prevented feelings of isolation and helped to explain worrying or confusing events. The professionals at Body & Soul are here to discuss your questions around when the best age is to name HIV and any concerns around blame and being afraid that your child will tell others.
Body & Soul’s programmes enable children and young people who are aware of how HIV affects their lives to grow in confidence, develop positive strategies and look to the future with high ambitions. Our services enable young people to
continue to gain support from both peers and professionals long after they have initially found out about HIV. Experience and positive feedback has shown that when a child is able to access Body & Soul regularly both before and after finding out about HIV, it significantly eases the process and highlights the importance of peer support.
The views of children and young people living with HIV are key in influencing and directing the process of telling them about HIV. Below, you can read some reflections of Teen Spirit and BaSe members on the process of finding out about HIV.
“I feel it’s my information too and I should know what’s happening to me. I think children can be told about HIV in a way they can understand. If they’re correctly informed about HIV, it will take away the fear of HIV as they grow older.”
“When I first found out I had HIV I was scared. I thought I was going to die. I was frightened, terrified. But as soon as I learned about it I was fine.”
“When my mum told me I was only 10. Now I’m 11. She was scared to tell me, so she came to Body & Soul and spoke to someone here and in the end I was told at Body & Soul that me and my mum are both diagnosed with HIV. I was upset, but I am fine about it now.”
“Don’t be afraid. Just be strong and brave because they are your children. So confront it with them and don’t worry because you know that you feel fine about HIV and yourself.”
While Body & Soul can outline some of the ways in which telling children and young people about HIV can take place in a positive way, most important to us is
to be flexible and accommodating of the needs of each family. No family is the same and we recognise that there is no “one size fits all” approach to naming HIV. We understand that talking about these issues can be very challenging and that there can be cultural, religious and historical considerations to take into account.
It is widely accepted amongst professionals who work with young people affected by HIV that by the age of 10, children have a right to know how HIV affects their lives. This is an age where children are experiencing many changes and most will have a lot of questions. There are variable factors which may influence when you choose to name HIV to your child, such as their maturity and developmental stage, issues with medication, or behaviour. We will work with families at a pace that they are comfortable with and we will balance the needs of parents and carers with the needs and rights of the child.