Worries and Fears

You are not in this alone. Your health team will help you think about these things and work out what you can say and when. You may have a support worker or a social worker that you can also talk to about this, or perhaps another parent who has already had their child tested. 

They will talk to you about what will happen if the test comes back positive so you are prepared for all outcomes. It is worrying, but knowing a child’s HIV status means that the health team can keep that child healthy and well.

Here are some of the worries and fears parents have shared with us about getting their child tested for HIV.

“My child will tell others about my HIV”

As we stress in talking HIV, children know the difference between public and family information. They will not go and tell everyone as they know this is something that needs to be kept in the family, and they value being given the chance to be part of that.

For many young people, they already know as they have found letters, overheard conversations or looked up the names of medicines in the house, so they may have already been keeping this confidential without you even asking them to.

“Other health professionals will find out about HIV in my family when my child is tested”

If you are worried about where the information about your child’s test will be stored, talk to the person doing the test beforehand. Medical records are confidential, so you can ask where it will be recorded and who will be able to see it.

If your child’s test is negative, no one needs to be told about this. If it is positive, then the HIV children’s specialists will look after your information. No one outside of your child’s medical team needs to be told, so you do not have to worry about this.

“I worry about meeting people I know at the hospital visits and then having to say why I’m here”

If you are worried you may bump into someone when you are at hospital and they ask you why you are there, you should prepare some answers beforehand. You could just say you are coming for some tests, or collecting some results. Talk to your doctor or nurse, they can help you with that. If you are really worried about this, ask that the tests happen somewhere you are comfortable with.

“My partner does not know I have HIV. If I have our child tested, I will have to tell them.”

Although it is important that your partner knows you have HIV, as they will need to be tested too, at this point the most important thing is having your child tested. 

After you have had your child tested, you may want to go and find help from a support service or health advisor for help with telling your partner. 

“I know my child and they are well”

Even though they may appear well, this does not necessarily mean they do not have HIV. It can take a number of years for signs of HIV to become apparent in an individual and early diagnosis is the best way to get the best health outcomes if your child is found to be living with HIV.

Who can help?

There are many different people who can help you through this. There may be family or friends who know you are living with HIV, who you can talk to and get support from. 

At the hospital, there may be a member of staff you already feel able to talk to, such as your health advisor or nurse. Ask them to support you. Your health team will want to help you in any way they can, as they want this to be as easy as it can be for you and your child. There may be a hospital social worker that can help you too.

If you use a support service or group, you could see if there is someone there who can support you. 

If you have never been to a support service, perhaps now is the time when they could really help you. They could introduce you to other parents who have been through this, or who are going through this.

Organisations like the 4M network and Positively UK can help.

You can talk to some people on a chat room specially set up for people living with HIV called My Community Forum.