At Body & Soul we understand that HIV affects the whole family, which is why every member of the family is treated as an individual with different, equally important needs.
When children first find out about HIV it can be a very difficult time. All members of the family need support in order to ensure that the process is as positive as possible. Having the time to plan and think through issues is vital.
In our experience, talking to children and young people about HIV has been a mainly positive experience for families. It can help to build trust and openness but it can also be a relief for parents and children. Where this has not been the case it has often been when disclosures to children have been unplanned and unintentional. Examples of these include a parent saying, “You have HIV” or a professional accidentally telling a young person during monthly blood tests that
they have HIV. In both cases the young person was left confused and anxious.
Supporting Parents
Parents who access support from Body & Soul can benefit from talking to their peers about disclosing to children. Workshops and 1:1 sessions provide a chance to ask questions and hear others share their experiences.
Parents can also hear from young people as they openly share their experiences of how they found out about HIV.It’s valuable for parents to hear how young people would have ideally liked to have been told. Young people have often expressed in these workshops that finding out has given them more of a sense of being in control, prevented feelings of isolation and helped to explain disturbing or confusing events. In addition to this, with constant support and advice from experienced staff at Body & Soul, parents can work through their
telling their children. These can include when the best age is to tell, being afraid that the child will tell others and wondering……“Will they blame me?”
Through these different opportunities parents considering talking to their children are able to build up confidence and knowledge of how they would feel comfortable doing it.
For children and young people who are aware of how HIV affects their lives, our programmes enable them to grow in confidence, develop positive strategies and to look to the future with high aspirations. These groups also mean that young people are able to gain invaluable 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 prior to disclosure it significantly eases the process and highlights the importance of peer support.
The views of children and young people are paramount in influencing and directing the process of disclosure. Below are some views of Teen Spirit members and members of the BaSe aware group about the process of finding out.
Some views on disclosure from the BaSe Aware Group:
“When I first found out I had HIV I was scared. I thought I was going to die. I was scared, 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 diagnosed with the disease. I was upset, but I am fine about it now.”
One of the group who was disclosed to before the age of 10 advises parents:
“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.”
Some views from Teen Spirit:
“As a young person living with HIV, I feel it is my information and I should be the one to know what is happening to me and deciding what to do”
“I think children can be told about HIV in a way they can understand. Also, if they are informed with the correct knowledge about HIV, it will take away the fear that surrounds HIV as they grow older.”
While we can outline some of the ways in which a positive disclosure can take place, one of the most important things we always consider is that we are flexible depending on the needs of each family.
It is widely accepted amongst professionals who work with young people affected by HIV that by the age of 13 children/young people have a right to know. This is an age when they are becoming young adults and most will have a lot of questions. However there are variable factors which may influence this such as the maturity and development of the child, issues with medication, or behaviour. We work with each family at a pace they are comfortable with and balance the needs of the parent with the needs and rights of the child.
As far as possible, disclosure needs to be carried out in a planned manner. The maturity and age of the child must be taken into account and appropriate
language used.
The child needs to be free to ask questions, consistent with an honest and open approach. As disclosure can take a long time it is essential to develop relationships that establish confidence and trust.
Working with other professionals involved with the family is also very important. Clear communication with clinicians, social workers, and carers has been crucial in ensuring successful disclosures.
