CHIVA’s Amanda Ely Addresses Difficulties Involved With Telling Children They Have HIV

Amanda Ely is CEO of the Children’s HIV Association (CHIVA), an organization that provides support to children living with HIV in the United Kingdom and Ireland and their families.

Transcript

Can you discuss the difficulty involved with telling a child born with HIV they have the virus?

This is one of those issues that we have done work in other countries, and we attend events and conferences and things that we meet professionals in other countries doing similar work, and everybody has this experience. It’s one of those really interesting issues that crosses into different cultures and societies in a really similar way.

One of the key problems is the ongoing impact of HIV-related stigma, which means that for many families, it’s very difficult to talk about HIV because they’re very worried about the consequences of that and people in communities, unfortunately, still reacting badly to the knowledge that there’s HIV in a family with an individual, and the fears of rejection and discrimination around that. In some settings, of course, this can be really serious actually in terms of sort of threats of harm, etc.

But nonetheless, no matter what the context, these fears tend to persist. So that means telling a child about their HIV is even more complicated than it would be if you were telling the child about another health condition, which similarly affected them; for example, diabetes or something, which is a lifelong condition requiring treatment but without the stigma.