Discussing HIV Status with Kids

Discussing HIV Status with Kids

When you start to think about talking to your kids about their HIV status or your HIV status, you can feel various emotions.

It is normal to feel overwhelmed, guilty, anxious, or frightened. It can help to talk about your feelings with someone that you trust like a friend, family member, counselor or doctor. You can even talk to that person about what you will say and how you will say it. You may even want to share your disclosure plans with someone who already knows about your status so that they can be prepared to give calm, reassuring, accurate responses if your kids bring it up while with them.

Remember, everything you know about your family such as how your kids learn new information, what they may already know, and what feels supportive. You can use this to decide how to talk about the status of your child or your own status. While there may not always be a best way to talk about your status, there are steps that you can do in order to prepare.

Letting your Kids know that you are HIV positive

Telling your kids that you have HIV can be hard. It could be helpful to prepare by thinking about how your kids may react and what they may want to know based on their maturity and age. You can even find it helpful to talk to other parents who have disclosed their status to their children.

Your kids may ask about your health, yet their main concern could be what happens when they get sick. They may need reassurance that they are going to be taken care of if something happens to you. They can find reassurance in knowing how you will be cared for if you happen to get sick.

Kids may want to know how you got HIV and if they will get it. Based on their ages, they could have different questions. They may not even have questions at all or they could ask questions at a later time. It doesn’t matter when they ask their questions, it is best to only provide them with factual information. Lying can damage the relationship you have with your kids and it could lower their trust in you.

If your kids already know a little about HIV, through the internet, TV or school, you might be able to help them learn more than what they know. Older kids or teens can learn about HIV in school. It doesn’t matter how much knowledge they have; they might already suspect that something is up. Your kids could see you going to the doctor more than normal or taking daily medications. If your kids already feel that something is up, then they may get mad that you didn’t tell them what was going on. When you disclose your status to your kids, it can help them to openly talk to you.

Let your kids know who they can talk to about your status. Tell them who you have told. Be prepared to know that they could feel angry or disappointed if many people knew before they did. Your local ASO might have a youth or children’s group where they can talk to others about similar situations. Your doctor may even have a counselor who can talk to your children.

Telling your Kids about their HIV status

Before you tell your kid that they have HIV, you should think about why you are wanting your child to know. If your child has been in the hospital, asking questions and taking medications, then just make sure that you are okay with your kid knowing. If it is not okay with you, then your child could sense that and it could be harder for them to be okay with it.

It is very important that you have HIV related information ready before you start talking to them. Look for things that have an optimistic tone. Kids may want to know how they became HIV positive, if they will get sick or if they will die. It is important to know how you are going to answer these questions. Be sure to consider your feelings in this as well. You may wait to have this conversation until you have emotional support or you have talked through the answers with a close friends.

Kids will need various amounts and types of information based on their age. Start with simple ideas that are most important. Extremely small children may be a bit young to know the name of this virus or many details, but do try to be as honest as possible. You can tell them more as they begin to age so that they can understand more details.

Younger kids will need information about things that will affect them at this moment in life. They may need basic information such as if they bleed and know that no one should touch their blood and they shouldn’t touch anyone else’s. Teens need to know more about how HIV is transmitted and how to keep this from happening. All kids need to know that they can’t give HIV to their family or friends through using the same toilet, kissing, hugging, or casual contact.

It could take a bit of time for a child to accept this information. Let your kids know that they can talk to you about anything. It is vital that your kids see you as an adult that they can trust and feel comfortable with so that in the future they will come to you with questions.

Your kids could feel depressed, scared, angry or isolated by knowing that they are HIV positive. It may help if they know that someone is there that they can talk to. Even before you decide to tell your kid that they have HIV, you can arrange for them to have a support network that is made up of trusted friend and family as well as doctors.

There some laws in certain countries that protect people who have HIV from discrimination, and you may not want everyone to know the status of your child. You can tell them that their HIV status is a private family matter and you will decide as a family on who should know and how they need to be told.

Taking care of yourself

It can be hard to disclose HIV information to kids. It is best to tell your kids as early as possible, especially when they start asking questions. It is normally easier to tell the truth than try to cover it up. Once a child knows, then the family can start to openly deal and discuss feelings that may come up. If you want to make disclosure much easier for your children and yourself, follow these tips:

  • Deal with your feelings first. You need to understand your own emotions about HIV diagnosis.
  • Build up a strong child-parent relationship.
  • Seek support from friends, counselors, social workers and other people before and after disclosure.
  • Prepare by getting HIV information ready, create the right environment and arrange for support for your kids.
  • Find the right time to disclose that will be free from appointments and interruptions.
  • Try to be relaxed and positive before the conversation starts. Even if you are sad or anxious, being okay and relaxed with your feelings can help your kids to trust you and be open to their own feelings.
  • Disclosure is a big process. It is likely to have multiple conversations. Even if your child doesn’t respond how you wanted them to right away, with support, time and information they will be more accepting.
  • Encourage them to ask questions at any time.
  • Provide as much reassurance as they need and give plenty of hugs. Make sure that you get hugs too.
  • The Well Project. (2019). Talking with Your Children about Your HIV Status or Your Children's Status. Retrieved August 2021
  • Avert. (2021). Sharing Your HIV-Positive Status. Retrieved August 2021
  • National Center for Biotechnology Information. (2010). Telling Children They Have HIV: Lessons Learned from Findings of a Qualitative Study in Sub-Saharan Africa. Retrieved August 2021
  • WebMD. (2020). Children With HIV and AIDS. Retrieved August 2021
  • Frontiers. (2016). “When Should I Tell?”: Perspectives on Disclosure to Their Children among Parents with Perinatally Acquired HIV. Retrieved August 2021
  • RAND Corporation. (n.d.). How Parental HIV Affects Children. Retrieved August 2021
  • Children Now. (n.d.). Talking with Kids - HIV/AIDS. Retrieved August 2021
  • Better Health Channel. (n.d.). HIV and Women – Having Children. Retrieved August 2021
  • Oxford University Press. (2012). Disclosure of Their HIV Status to Infected Children: A Review of the Literature. Retrieved August 2021
  • The Office on Women's Health. (2018). Telling People You are HIV-Positive. Retrieved August 2021

Written by Mark Riegel, MD

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