The weekend after Thanksgiving, I received the following text from one of my friends: “Bella’s in the hospital. Her legs were hurting, they did tests… It’s leukemia.” Bella is one of my 8 year old daughter’s good friends. All of a sudden my professional world and personal world were colliding. As I looked up from my phone and at my daughter, one of my first thoughts was, how am I going to explain this to my daughter so that she isn’t terrified and understands leukemia?
I went into Child Life mode. After explaining leukemia to her in a developmentally appropriate way, my daughter had hope, she wasn’t scared, she knew the Doctors had a plan and were working hard to help Bella. I offered the school teacher my assistance with the class. Together we spoke to 60 3rd graders and many of their parents about leukemia. I used a drawing of a child, highlighting the veins and explained what platelets, red and white bloods cells were, and then what leukemia cells were. After the lesson many of the parents thanked me and told me that the explanation helped them with the medical information as many of them were having hard time understanding how leukemia affects the body.
I was reminded how hard medical information is to understand for anyone who isn’t in the field and how we should simplify the information. So how do we do that?
- Before you give any information to a child, speak with the parents privately. Everyone processes medical information differently. Parents should be given the opportunity to have their reaction without the child present. That way they can assist the team when the time comes to talk to the child. They know their child and can help to guide you on the best way to deliver medical information.
- When delivering information to children, consider that like adults, children process information in many different ways. They may be quiet, they may ask several questions, they may act-out their worries through play. They also look at their parents for emotional cues. That is why it is important to speak to the parents first so they can have the chance to be a strong support for their child.
- Make it as simple as possible. Prior to talking to a family, give yourself a couple of minutes to think about how you can explain the information to them in a way that the youngest in the family could understand. For example, instead of saying “We need to intubate your child”, another way to say it is “Your child is working hard to breathe on her own, we need to give them a breathing tube that goes down her throat to breath for her. This will allow her time to rest and start to recover”.
- Be prepared to use visuals to explain. Most people are not auditory learners. Always have a pen and paper in your pocket.
- Ask the family to repeat back what you have said. This allows you to see what the family has processed and you can clear up any misconceptions.
There’s an app for that
Simply Sayin’ – This is a wonderful free app created by Phoenix Children’s Child Life department. There is an anatomy drawing board, tips for preparations, and simple medical translations for just about everything for children. [iTunes app, Google Play app]
Thank you to Bella and her family for allowing me to share and learn from their story.