Amanda Ely, CEO, introduces us to The Children's HIV Association (CHIVA) of the United Kingdom and Ireland and details how the experiences of young persons living with HIV differ from those who acquire the virus as adults.
For children, adolescents, and young adults living with HIV, as well as their families, it’s important to provide psychosocial and family-based support, especially because the experiences of young persons living with HIV differ in several key areas compared with adults, noted Amanda Ely, CEO of the Children’s HIV Association (CHIVA) of the United Kingdom and Ireland.
Can you introduce us to CHIVA and tell us more about the organization?
My name is Amanda Ely. I'm the CEO of CHIVA, which is the Children's HIV Association of the UK and Ireland. Although we are called the Children's HIV Association, we work with young people as well. So, we work with children, adolescents, and young adults, and increasingly, we work with families. The children and young people we work with are all living with HIV. They are, for the most part, young people who have grown up with HIV, they've had HIV their whole lives.
We provide programs of direct support for them, which are both national and regional in the UK, and we work very closely with clinics. In regions, we have CHIVA staff working really closely with clinic teams as part of the [multidisciplinary teams] ensuring that the psychosocial support needs of young people are met and that family-based support can be provided where it's needed. Another really important part of our work is we work closely with health professionals and wider professionals who are working with this group to support them as well.
I guess our mission, if you like, is really to try and ensure that children and young people are well and live happy and productive lives and that they have positive aspirations for their future.
How do the needs of children living with HIV differ from adults?
Thinking about that sort of journey through childhood, every kind of childhood experience is navigated by them through their HIV, whether they know it or not, because obviously when they're very little, they may not know that they have HIV but the family is managing the way in which HIV is shaping that experience as they develop and grow. And it really does ebb and flow throughout their life, impacting them in different ways.
And then of course, the child is accessing health care throughout their whole childhood, and as they grow up. And by the time they reach adolescence, we're talking about a very experienced group of young people in terms of their medical care. They've been on treatment a very long time. By the time they're in adolescence, they may have been on a couple of lines of treatment. So when they move into adulthood, they've got all of that story behind them that makes their experience so different from an adult.
And I think the third area that's very different for children and young people is the complexity of the family experience. They're living with something themselves as a health condition that they have to learn to accept, understand, and live with. But they are mostly going to be in families where someone else also has HIV—so HIV becomes a family experience. These are young people who acquired HIV from their moms, so at least their mom has HIV, but often other people in the family as well. And that can make it more complicated because it's a family experience. It's not just an individual experience.