CHIVA’s mission is to ensure that children, young people and families living with HIV become healthier, happier and more in control of their own futures.
CHIVA works to ensure young people living with HIV have the treatment and care, knowledge, understanding, skills and wider support needed to live well and achieve their greatest potential.
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 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.
CHIVA’s 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.
CHIVA has existed as a specialist children’s HIV charity since 2008, and grew out of a health professional membership organisation established in 2002. They 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 they 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.
José is a profoundly deaf child.
He was only told about his HIV status just prior to attending CHIVA support camp. José 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 José 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 José more with his peers, and found about more about him as they got to know each other.
As the week progressed José began to integrate more with his peers, he is a skilled footballer and soon was holding his ground on the football pitch! José had never knowingly met anyone with HIV before camp. In the workshops on the last day of camp José 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.