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‘Telling a child that they have HIV is a sensitive matter and has to be handled correctly so that children get information they can understand at the right time.’
I arrived in the UK in 2007. I came from Uganda with my partner Frank and son Michael aged one.
We came to the UK to build a new life – it had been hard to leave home but we were excited about the future. However a year later, after feeling unwell for some time, I was diagnosed with HIV.
Finding out our son had HIV
After Frank and I had taken some time to come to terms with my diagnosis, we were advised to test Michael for HIV – we were shocked to find that he was also HIV positive.
It is very rare for a child to be born with HIV in the UK these days. Medical interventions and antenatal HIV testing usually mean mothers-to-be with HIV are diagnosed during pregnancy and can take steps to ensure the risk to their baby is reduced to below 1 per cent.
Sometimes, however, families are diagnosed with HIV when they come to live in the UK, as happened in our case. Our son needed to start treatment straight away and he has got used to seeing doctors and taking medication. Gradually our family adjusted to living with HIV and Frank and I went on to have two more children, who are HIV negative.
Getting some extra support
It isn’t easy to manage your own HIV as well as a child’s, especially when he doesn’t understand why he has to take medication, so we realised we needed some extra support. In 2009 we started going to Body & Soul, a London-based organisation working with families, children and teenagers who either have HIV or know that someone in the family does.
Last year Michael, aged eight at the time, was going through a very difficult period. He knew that he and I were ‘ill’ and he was struggling to cope with feeling different from his siblings. Not knowing what illness we had was causing him a great deal of stress and he was struggling to take his medication or understand why he needed to. His self-image and confidence were poor and he had stopped playing with his friends.
Telling our son he has HIV
After discussions with the team at Body & Soul, we decided that it would help to ‘name’ HIV to Michael. Telling a child that they have HIV is a sensitive matter and has to be handled correctly so that children get information they can understand at the right time. Research shows it is best if a child is aware of the term ‘HIV’ before they leave primary school. Telling children at an older age can result in them feeling angry that secrets about their health have been kept from them. Talking about HIV from a young age normalises it – openness and honesty have been shown to help reduce children’s anxieties.
Jane King, Head of Children’s Services at Body & Soul, prepared a carefully-planned programme of sessions to support both Michael and the family’s needs. She had a number of appointments with Michael – sometimes on his own and sometimes with Frank and I – to make sure he understood how the body fights off infection and how medication helps. We were present in the session where Michael was told about his HIV diagnosis, and he was in a safe, familiar space at Body & Soul.
It was hard for Michael to begin with because his younger siblings are still unaware of HIV, meaning he couldn’t talk freely and ask us questions at home. On the other hand, knowing he has HIV has made him less resistant to taking his medication.
Michael has now grown in confidence, his self-esteem has increased and he is mixing with other children again. He has recently joined the BaSe group, Body & Soul’s support group for 10-12 year olds who are aware of how HIV affects their lives. The group helps him to improve his understanding of HIV and to manage and positively express his feelings about his diagnosis.
Frank and I have nothing but praise for the staff at Body & Soul. The support we have received has helped us to live a normal family life despite my own and Michael’s HIV diagnoses.
Body & Soul
Body & Soul offers services to adults, teenagers, children and families including support groups and one-to-one support.
To find out more:
Tel: 020 7923 6880
Email: info@bodyandsoulcharity.org
Visit: www.bodyandsoulcharity.org
Source: How do you tell a child they have HIV?
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