This page is for people who are either thinking about fostering a child living with HIV or have found out that a child they are fostering is living with HIV. 

Fear and lack of understanding of HIV can make people feel scared – but there is nothing to be afraid of. Read through our pages of HIV information, so you can ensure your knowledge is up to date. It’s important you also know about confidentiality and who should be told about the child’s HIV status, and the support that the child, family and you yourself may need.

If your questions are not answered below then please email our social care lead and Chiva CEO amanda.ely@chiva.org.uk. We will provide answers and post them on this site so everyone can learn from them.

If you have adopted a child Living with HIV, the rest of the Families area of our site should give you the information you need. If you would like to share your story anonymously, please contact us. Your story would be hugely beneficial for others to read.

The child’s support needs

Through your foster care training, you will have received general training on providing support to children who have experienced difficulties in their lives. However, this training probably did not cover HIV.

It is important to think about the kinds of experiences a child may have had as a result of living with HIV. Here are some key points to help you:

HIV in the family

Most children who live with HIV in the UK have contracted it from their mother. This means they come from families where at least one other member of the family is living with HIV.

Bereavement

As HIV is a family condition, some children may have suffered multiple bereavements. This will have a dual impact: the experience of bereavement on a child, and the fear for their own mortality, as they live with the same condition. For more support and understanding of bereavement issues, visit Child Bereavement UK.

Stigma and secrecy

The child is living with a highly stigmatised illness. This can be a lot of pressure for them to manage. When a child is told they have HIV (which may not happen until they are 10 or older) they are also told not to tell anyone else. Living with this secrecy can have a big effect on children, how they internalise the social stigma of HIV, and their relationship with their medicine. Having someone to trust and talk to could be a big relief to them.

Medication

The anti-retroviral medication people living with HIV take can work extremely well if taken properly, but can have nasty side effects. Children can struggle with these. Medication also acts as a reminder that they have HIV, of past bereavements, or their fears for the future. Therefore, some children may need support around taking medication.

Sometimes there are things that can be done to make this easier, perhaps by changing medication. You may be asked to remind the child you foster to take their medication, or may need to advocate for them in health settings.

Open and honest conversations about HIV

Even though a child may live with HIV, it does not necessarily mean they understand it. They may be fearful about their own future and mortality. They may not actually understand what HIV does to their body and what they can do to live well.

You are not expected to be an expert in HIV, but together with the child, you could find out more about it through the youth pages of this website, materials in Chiva’s resource library and through other organisations. You can learn together while building a bond with the child, and creating a safe space for open conversations and questions.

An older child may have lots of questions about sex and sexual health. This is an area many struggle with, as they are born with a highly stigmatised sexually transmitted infection but have the same sexual feelings as their HIV-negative peers. Ensuring they understand how HIV is transmitted and how to keep both themselves and their sexual partner safe is important. Find more information on talking about sex here.

Your support needs

As a foster carer, you will know how important it is to receive support in your role. You will have a social worker and perhaps access to support groups. However, you may not be able to discuss HIV with these people. It is possible your social worker will not know the child you are fostering is living with HIV.

If you do need to talk to someone about issues around HIV, any professional who is working with the child in relation to healthcare or support, such as the child’s nurse or specialist support worker, would be a good person.

It is important that there is a good professional network of support around any looked-after child. As you know, you play a pivotal role as a foster carer. Make sure you establish a relationship with the HIV professionals who care for the child so you always have someone to talk to about any issues which arise.

Who to tell?

You may think you can tell your immediate family about the child’s HIV, as you are all in the same household and can trust them. However, it is important to follow the rules set out in any confidentiality agreement. This is not your information to share without the direct permission of the child or parent or social worker.

If you find this difficult, ask yourself these questions: who needs to know this information? You may feel you want to tell someone in your family, but do they need to know?

As there is no risk of transmission through living in the same household, there is no need for other members of your household or extended family to know.

This is very important to people living with HIV. They fear how people will respond to them once they know their HIV status because of stigma. And once you pass this information on, you can never get it back. You may think you are just telling your partner, child, or sibling, but then who will they tell and how can you control this information flow?

If you need to talk through these issues, the child’s nurse is a good person to contact. They will also be able to give general guidance and support on caring for the child.

If an older child is living with you for a longer period of time, they may build close relationships with other members of your household and choose to tell someone else in your family about their HIV status. You must always remember this is their decision and not yours.

Should I tell anyone outside of my family?

HIV is a non-notifiable disease, which means by law you do not have to tell anyone. There will already be a lot of professionals involved with this child, and those of them who need to know will already know.

Due to the discrimination people with HIV have experienced, most families choose not to tell schools, extended family members, youth clubs etc.

Always remember, the decision on who else knows about a child’s HIV status is made by them or their parent or social worker.