Explaining a medical condition is never easy, and explaining type 1 diabetes to a child can seem overwhelming and complicated.
How do you open the discussion? Where do you start? Diabetes is a complex condition, and it is usually best to learn as much as you can about the condition so that you feel more confident when explaining it to a child. There are many resources and lots of information around to help you.
If your child or another family member has just been diagnosed with type 1 diabetes, it is important to learn what changes you will need to make to your daily life. Here are some tips on how to do it.
The benefits of explaining type 1 diabetes to your child
Parents or guardians often find it very challenging to discuss difficult topics with children, they sometimes prefer to avoid the subject completely out of fear of the conversation going wrong. So, before looking at the correct way to go about it, it's important to know why open, honest discussion can be valuable for your child.
Explaining type 1 diabetes to children is:
- giving them the information they need to understand the condition;
- guiding them towards self-management of their condition.
The words you use could focus on:
- Explaining their treatment and lifestyle changes;
- Helping them to understand as much as they would like to.
It's a balancing act, as you also need to be mindful of their level of knowledge and maturity.
Type 1 diabetes has a considerable impact on children; school, family life, and leisure activities can become centred around blood glucose monitoring and treatment: frequent blood glucose testing, monitoring carbohydrate intake and calculating the doses of insulin to administer depending on eating patterns and physical activity. For younger children, these tasks require the assistance of an adult, until they are ready to comfortably manage on their own.
As your child grows, your involvement might evolve from an active role to more of a supportive one. Even young children, when properly guided and informed, can quickly adapt to managing their own diabetes, so it is important and helpful for them to understand what is happening.
Understanding is key to the successful transition of responsibility from caregiver to child, and a child’s ability to manage their diabetes themselves. Knowledge encourages involvement, it helps children take ownership of their treatment and gives can give them confidence.
Using simple, understandable, positive language
It can be very helpful to keep your explanation simple. The information that you give should be appropriate to your child's age, vocabulary, and understanding of the world.
When you explain type 1 diabetes to your child, try to keep your language simple and take care to explain any medical terms when you use them.
Consider using similes in your explanations, comparing the human body to something more familiar to your child. Diabetes involves complex and invisible processes, and it can be difficult for a child to imagine them.
You might, for example, illustrate your explanations with the idea of a car. This would be the equivalent of the human body. Explain to your child that a car needs fuel to move, just as the body needs glucose (sugar) to function. If the car has a broken part, it can no longer use the fuel. The same is true for people with diabetes, who can no longer use glucose for fuel because their pancreas is not working properly.
When doing all this, it's also important to understand how your child is feeling whilst you're having this conversation, it can cause some big emotions that need supporting. They may want to know more or they may want a break from listening, always keep this in mind.
Try to keep it light … but always honest
It is important to know when to tell your child about the risks and complications of diabetes, as this will help them understand why they should be careful with their treatment. If they understand the underlying processes involved in the condition, they will be more willing to make the necessary changes.
Give information that clearly explains cause and effect
Children can be eager for knowledge. They may often ask questions during their conversations with adults because they actively want to understand.
When dealing with type 1 diabetes, regardless of whether the condition affects them directly or not, your child might want to ask questions, which is why it is key to provide consistent, logical information. Numerous studies have shown that children are aware of the quality of explanations they receive:
- From the age of 4, they can detect illogical and inconsistent information (for example, a glass cannot be empty and full at the same time)
- At the age of 5, they give more credit to logically consistent information;
- From 6 years old, they prefer explanations that provide new information (for example that arctic hares have white fur because it allows them to hide in the snow)
Some children prefer cause-and-effect explanations (an example of a cause-and-effect explanation would be ‘because the alarm was not set, they were late for work’
Try to avoid closed answers such as “I don't know” if you can. A simple explanation might be helpful, so don't hesitate to share your knowledge and take the time to discuss it with them. If you don't know the answer, you could always research it with them and find out together!
Causal explanations have many benefits for children. In addition to making it easier for them to think through, it may also make them want to know more. They will remember it more easily and are therefore more likely to use their new-found knowledge.
Make use of pictures, books, and digital media
Books, pictures, colouring books, apps… There are a lot of fun, therapeutic educational materials available to help you explain type 1 diabetes to children. Designed to be attractive and impactful, they can illustrate explanations and encourage self-management of the condition.
GlucoZor World app
GlucoZor World is an app developed in partnership with i-Lab, Air Liquide’s laboratory for new ideas, featuring GlucoZor®, a fun dino living with T1D. Create your own GlucoZor, learn to monitor its blood glucose and take care of it. It loves heart tasty food, cuddles and playing outside!
Available on iOS at this link: https://apps.apple.com/gb/app/glucozor-world/id1445991115
Coming soon to Android!
Visual media, in particular, helps with understanding complex ideas. Consider choosing brightly colored pictures, as they capture the attention of young children and encourage them to engage.
Books are another great way to explain a subject, get children thinking, and initiate conversations about their worries. Reading can give children the opportunity to address some of the complexities of life in a safe environment: identifying with fictional characters and situations can prepare them for dealing with difficult topics. Books can also help them feel less alone, as they realise that their experiences can be shared with others.
You can also ask your child questions, helping them to see the connection between their own life experiences and the characters in the book.
Use play and storytelling
Like books, play helps initiate interaction with children. You could explain diabetes in a fun way, by telling a story with puppets, soft toys, or dolls. You could involve different toys/characters, and give them short, easy-to-remember names so that the children can identify with them more easily.
In the context of illness or hospitalisation, play activities not only help children to develop their knowledge about type 1 diabetes but also to understand the need for treatment aimed at avoiding complications.
Several studies have shown that children perceive needles as painful and intimidating. If they undergo unpleasant medical procedures without understanding the reasons for them, their fear and anxiety increases. Stories can help to reduce children's stress, fear, and pain, as they become familiar with the situation and grasp what is happening to them. Storytelling through play can therefore be very useful when you need to administer the treatment yourself, such as insulin. By understanding the importance of it, children are more likely to accept potentially painful or distressing treatment and embrace it in their daily lives.
- Jeanine Porto Brondani, Eva Neri Rubim Pedro. The use of children’s stories in nursing care for the child: an integrative review. Rev Bras Enferm. 2019 Dec;72(suppl 3):333-342. doi: 10.1590/0034-7167-2018-0456.
- Marina N F Arruda-Colli, Meaghann S Weaver, Lori Wiener. Communication About Dying, Death, and Bereavement: A Systematic Review of Children’s Literature. J Palliat Med. 2017 May;20(5):548-559. doi: 10.1089/jpm.2016.0494. Epub 2017 Mar 27.
- Noyes JP, Lowes L, Whitaker R, et al. Developing and evaluating a child-centred intervention for diabetes medicine management using mixed methods and a multicentre randomised controlled trial. Southampton (UK): NIHR Journals Library; 2014 Mar. (Health Services and Delivery Research, No. 2.8.) Chapter 2, Comparison of diabetes clinical guidelines with children’s diabetes information, and critical discourse analysis of selected children’s diabetes information.
- Léia Alves Kaneto, Elaine Buchhorn Cintra Damião, Maria de La Ó Ramallo Verissimo, Lisabelle Mariano Rossato, Aurea Tamami Minagawa Toriyama, Regina Szylit. Educational Workshop using games improves self-monitoring of blood glucose among children. Rev Lat Am Enfermagem. 2018 Oct 25;26:e3039. doi: 10.1590/1518-8345.2400.3039.
- Nina A Zeltner, Mendy M Welsink-Karssies, Markus A Landolt, Dominique Bosshard-Bullinger, Fabia Keller, Annet M Bosch, Marike Groenendijk, Sarah C Grünert, Daniela Karall, Beatrix Rettenbacher, Sabine Scholl-Bürgi, Matthias R Baumgartner, Martina Huemer. Reducing complexity: explaining inborn errors of metabolism and their treatment to children and adolescents. Orphanet J Rare Dis. 2019 Nov 8;14(1):248. doi: 10.1186/s13023-019-1236-9.
- Caren M Walker, Elizabeth Bonawitz, Tania Lombrozo. Effects of explaining on children's preference for simpler hypotheses. Psychon Bull Rev. 2017 Oct;24(5):1538-1547. doi: 10.3758/s13423-016-1144-0.
- Carol K Sigelman, Sara E Glaser. Characterizing Children’s Intuitive Theories of Disease: The Case of Flu. Cogn Dev. Oct-Dec 2019;52:100809. doi: 10.1016/j.cogdev.2019.100809. Epub 2019 Jun 22.
- Candice M Mills, Judith H Danovitch, Sydney P Rowles, Ian L Campbell. Children’s success at detecting circular explanations and their interest in future learning. Psychon Bull Rev. 2017 Oct;24(5):1465-1477. doi: 10.3758/s13423-016-1195-2.
- Brandy N Frazier, Susan A Gelman, Henry M Wellman. Young Children Prefer and Remember Satisfying Explanations. J Cogn Dev. 2016;17(5):718-736. doi: 10.1080/15248372.2015.1098649. Epub 2016 Feb 23.
- Brandy N Frazier, Susan A Gelman, Henry M Wellman. Preschoolers' Search for Explanatory Information Within Adult- Child Conversation. Child Dev. Nov-Dec 2009;80(6):1592-611. doi: 10.1111/j.1467-8624.2009.01356.x.
- Katarina Karlsson, Kathleen Galvin, Laura Darcy. Medical procedures in children using a conceptual framework that keeps a focus on human dimensions of care – a discussion paper. Int J Qual Stud Health Well-being. 2019 Dec;14(1):1675354. doi: 10.1080/17482631.2019.1675354.