Enhancing the health and social wellbeing of children and young people living with HIV

Confidentiality and HIV

It is important to remember that you have a right to confidentiality over either your own or your child's medical information. You do not have to tell the foster carer who is going to be looking after your child that you are living with HIV. And the social worker should not tell the foster carer without your permission.

Your HIV status is your personal health information and professionals should not disclose it to other people without your permission.

It might be helpful to talk to the social worker about this when you first meet them. Make sure there is a clear understanding that it is you who decides who is told and that a confidentiality agreement  is made between you. 

Unfortunately some social workers do not know a lot about HIV, and may not understand how important this confidentiality is. They might think it is important for everyone involved to know that you are living with HIV. Bringing up the topic of confidentiality and reminding them that they need your permission to share this information with other professionals should help you to keep control of this.

If they question this, you can tell them to get information from professional organisations such as the CHIVA Social Care area or the National AIDS Trust.


Deciding to tell the foster carer about your HIV status

You may find you build up a relationship of trust with a foster carer, particularly if they are looking after your child for a longer time. You might feel you want to tell them about your HIV status; perhaps your child knows and you feel it would be helpful for them to be able to talk to someone else about it.

Talk this through with the social worker. You could also get support from someone else such as your nurse or a support worker in a voluntary organisation. There is information for foster carers about HIV once you have told them. There is also information on this site for them.

If you do decide to tell them, make sure that you have a confidentiality agreement with the foster carer, so it is made clear that they must not share this information with anyone else (which includes their family members).


Confidentiality and my child’s HIV

You should not be forced to tell a foster carer who is looking after your child about their HIV status. For example, if it is a temporary stay and the child is older and can manage their medication or is not on medication, there may be no reason for the foster carer to be told that they are living with HIV.

Remember you and your child (when old enough) have the right to control who knows about their HIV status, and professionals must have your permission if they want to share this information with foster carers and other professionals.


Younger children

A younger child needs more care and support with medication, and if they are staying in foster care longer, it may be necessary for a foster carer to be told about the child’s HIV status.

It is very important that a confidentiality agreement is made at the beginning so the foster carer is made aware they cannot tell other people this information. It will also be very important that the foster carer receives training and has access to information and support about HIV and children living with it.

The social worker should make sure this happens. They can find out more information about fostering an HIV positive child on this site.