Managing Devices, Screen Time & Online Sharing 

The internet can be a great tool for kids. Digital technology can also help children gain language skills and increase creativity. Connecting online is a great way for parents or caregivers of children with bleeding disorders to interact and ‘meet’. It is important to explain your expectations for their device time and to keep your child safe while online. It is also important as a parent or caregiver to think about what content you post online about your child and their bleeding disorder.  

The American Academy of Pediatrics (AAP) has recommendations for media use for infants, toddlers and preschool aged children, mentioning the benefits but also the risks, including impacts on sleep, weight and child development. They recommend avoiding use for children under age 2, and limit to 1 hour a day for 2- to 5-year-olds and offer other tips for families with young children and school aged children. If you do allow your child to use devices and be online, review these Tips for Keeping Your Child Safe. 

At this stage, you as a parent or caregiver may be the one spending more time online when it comes to your child’s bleeding disorder. Finding communities of caregivers going through the same thing can be an important source of support and doing so online or on social media can make that easier. There are some things to consider though for your child’s safety and privacy when sharing online about their bleeding disorder. You can also find general tips for your own online safety and privacy here. 

Here are some things to keep in mind when posting about your child and/or their bleeding disorder on social media: 

Be mindful before you post.

Be aware that the information you post may be seen by the general public, including potential employers. This can include chat rooms, blogs, and platforms like Facebook, Instagram, TikTok, Twitter, or other sites for family and friends. Not everyone understands bleeding disorders so it can be helpful to think about how others may view your social media posts.   

Be mindful of the content you are posting about your child.

Be purposeful and thoughtful about when/where/what/how/why you are posting online about your child. Think through where your story ends and your child’s story begins. Before posting about your child, ask yourself, whose story is it to tell? Will what you’re sharing online impact your child later in life? When debating what to post, be aware that you are creating a digital footprint for your child before they can consent to it. A digital footprint is the information that is available to others about a person’s activity online. When you are posting, using a pseudonym (a name different than their real name) can keep personal information about your child private. When your child is old enough to consent, ask for their permission to share content online. You can still be an advocate for the bleeding disorders community and your child, without giving all the details online.

Do your research.

Be careful about sharing personal information, including information related to a bleeding disorder on social sites and chat rooms.

  • Read the About Us or FAQ sections to learn as much as possible about a site before you post your information. You may also find information in an About Us section on how to request to remove information or a post. If that isn’t stated, make sure to contact them to understand their policy and if they even will remove content if needed.
  • Read the user agreement carefully.
  • Read the privacy policy before entering your name, address, and any other personal information in a database.
Use your judgement about information you are getting online.

It is important to be an informed user when online. You can use the internet to research treatments, products, protocols, symptoms, etc. Always be aware of the sources from which you are getting your information. Remember that information found online is not always factually accurate. Each person’s situation is unique, and information online does not apply to everyone’s situation. The best way to get accurate information is to bring any questions to your child’s health care provider.

Be mindful of the questions you are asking online.

Being able to connect with other parents or caregivers in the bleeding disorder community online is important because they understand what you're going through. It can be helpful to share experiences, learn what others are going through, learn how they overcame challenges, and ask questions like how best to prepare for a Hemophilia Treatment Center (HTC) visit. Especially when talking about treatment, always remember that everyone's experience with a bleeding disorder is specific to them and cannot be applied to everyone. If you have a question about treatment, activities your child can participate in, an emergency, or how to handle a bleed, talk with a health care provider or your child's HTC. If you are concerned, call your HTC or go to the nearest emergency department. Always bring questions or ideas you have about your child’s treatment plan and bleeding disorder to your health care provider. You and your healthcare provider can work together to make the best decisions for your child’s care.