The Children's HIV Association works to enhance the health and social outcomes for children, young people and families living with HIV.

Why we're hereCHIVA logo

There are approximately 1,000 children and young people accessing specialist HIV care in the UK, most of whom contracted the virus through mother-to-child transmission.

They live in families who are frequently marginalised, stigmatised and isolated, with many living in poverty. Some have suffered multiple bereavements, whilst others take on caring responsibilities. All must manage growing up with a highly stigmatised chronic illness that is very difficult to talk about and is frequently kept hidden from friends, school and wider family members.

The social and psychological impacts of these experiences can be complex often leading to poor mental health and wellbeing.

CHIVA has a youth committee of young people with HIV who give a voice to children and young people with HIV in the work of CHIVA and in the public domain. They work with the media, policy makers and the public to tackle the stigma around HIV.

Since 2010, CHIVA have run an annual support camp- Freedom to Be (F2B), bringing together up to 100 teenagers with HIV and addressing three key aims:

•    To tackle social isolation

•    To improve knowledge and understanding about HIV

•    To enhance self esteem and well being

F2B offers a programme of workshops, therapeutic and fun activities, developed to explore growing up with HIV, build peer networks and personal confidence.

What we do

We provide critical support to children and young people with HIV across the UK.

HIV is a chronic life long illness requiring a strict daily medication regime. Adhering to HIV medicine can be challenging, regimes can be complex, side effects very unpleasant and there can be a negative psychological affect, as medicine can serve to remind young people of their HIV, which many struggle to accept. It is also something most children and young people with HIV have to hide. The secrecy HIV demands leads to feelings of difference, and fear of rejection with families marginalised and isolated.

Our work focuses on reducing the extreme isolation children growing up with HIV frequently face, and supporting these young people to accept and understand their HIV status. Participants gain critical support from the peer networks they develop with each other through our work, increasing their capacity to live well with HIV.

Young people with HIV are empowered to shape the work of CHIVA through our youth committee, and we support their engagement with media and public forums to increase public awareness and address ongoing stigma.

About CHIVA

CHIVA has existed as a specialist children's HIV charity since 2008, and grew out of a health professional membership organisation established in 2002. We evolved in response to a clear need to support the specialist and unique needs of a relatively small population of children growing up with HIV in the UK. Originally the professional membership network served to share expertise  amongst medical professionals to ensure the specialist needs of children with HIV could be met.

Over the years we recognised the many affects of HIV on children and their families beyond the physical health impacts of the disease. Many families experience significant difficulties coping with the illness. Children and young people cannot access wider sources of support available to them if they were living with another chronic illness that is not highly stigmatised. CHIVA works to address the negative and difficult social and emotional impacts of HIV as well as continuing to support professionals to ensure the best health outcomes possible are achieved for every child with HIV in the UK.

Jose's story

Jose is a profoundly deaf child.

He was only told about his HIV status just prior to attending CHIVA support camp in 2016. Jose attends a boarding school for deaf children, and is in the care of the state.

CHIVA appointed two BSL (British Sign Language) interpreters to attend camp for the week to ensure Jose's inclusion in all aspects of camp.

When Jose arrived at camp he was quiet, and looked anxious a lot of the time. He quickly bonded with his interpreters and during the first couple of days he would mostly be seen spending time with them during meal times and breaks from workshops and planned activities. He bonded well with his young adult key worker volunteer, who had also grown up with HIV. His key worker worked to try and integrate Jose more with his peers, and found about more about him as they got to know each other.

As the week progressed Jose began to integrate more with his peers, he is a skilled footballer and soon was holding his ground on the football pitch! Jose had never knowingly met anyone with HIV before camp. In the workshops on the last day of camp Jose began to ask a lot of questions about HIV, and asked to speak with his doctor as he had a lot of questions about his HIV and his family background.

Following camp his doctor and social worker both shared that he had since been able to reflect what he had learned about HIV and was significantly more confident in talking about HIV and able to ask questions about his HIV. Jose has since told his doctor he wants to come back to support camp again in 2017.
 

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