Receiving a diagnosis of inflammatory bowel disease, or IBD, for your child can be an emotional, daunting, and overwhelming experience. You may find yourself grappling with a whirlwind of emotions, from concern and uncertainty to fear and grief. You may be wondering how you will ever be able to help guide your child through the diagnosis and management of the condition when you have so many questions yourself. How will you break the news of the diagnosis to your child? How will you encourage healthy conversations about IBD? As a parent, your support and communication with your child can make all the difference in helping your child to cope and adjust to this new reality. In this post, we'll aim to explore strategies and tips for talking to your child about their new IBD diagnosis.
Before we begin, please note that this page is not intended to be a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Additionally, please note that this page only provides suggested tips and strategies for having these conversations with your child. You know your own child best and can better discern if these strategies will be helpful for you and your child. Trust your intuition! For more information or support, you can communicate with your child’s doctor or another healthcare professional. You can also talk to a member of the IBD Connect team or other parents of children with IBD for more suggestions on how to smoothly navigate these types of conversations. The majority of parents or caregivers who attend IBD Connect support groups have undergone similar conversations with their child. If you would like more information about how to connect with a support group, feel free to email me or check out the links at the bottom of this post. Now, let’s dive into the content!
Tip #1: Remember that this is not a “one and done” conversation.
Just like with any other serious topic you need to discuss with your child, talking about an IBD diagnosis is not a “one and done” conversation. When you initially talk to your child about the diagnosis, remember that your child’s future ability to manage their condition or process their emotions is not dependent upon this one first conversation. Rather, as the parent or caregiver, you should aim to foster an environment in which your child feels comfortable coming to you with their anxieties, questions, or concerns at any given time. Your child may not be ready to talk about their feelings or ask questions with the first conversation you have about the diagnosis, but they should know that they can come to you at any time to do so. Communicating your love and support to your child is vital. Create a culture in your home that allows your child to feel free to ask questions or express their emotions about IBD at any time. You don’t necessarily need to have one “big” conversation. Having a lot of “little” conversations is okay too!
Tip #2: Be honest and age-appropriate.
Begin conversations about IBD with honesty, but be sure to tailor your honest explanations to their developmental stage, using age-appropriate language and concepts. Remember, telling your child about their IBD diagnosis is a process that evolves as they grow. As mentioned earlier, it is not a “one and done” conversation. Be sure to keep the lines of communication open so your child can feel comfortable discussing their feelings, concerns, and questions with you. Together, you can navigate the challenges of IBD as a team, ensuring your child receives the care and understanding they need to thrive. Here are some general guidelines for talking with your child about their new IBD diagnosis at each age level. Remember, you know your child best!
Preschool and Early Elementary School Age (3-7 Years)
At this age, children typically have limited understanding of complex medical terms. You may choose to begin by explaining that there's something inside their tummy that's not feeling well. You can use a gentle analogy, such as suggesting that their tummy is a "tummy superhero" that is fighting against a tricky villain. You may choose to create a simple storybook or use drawings to illustrate the concept of IBD. Continuing with the superhero analogy, you may choose to describe how doctors and medicines are their tummy’s “sidekicks” helping to make their tummy feel better and fight against the villain. There are several other analogies you can use to help your child understand their diagnosis. Feel free to research and pick one that works for your child! Emphasize that they are not alone, and you, along with medical professionals, are there to help. Reassure your child that there is nothing they did to cause this diagnosis and that you love them no matter what.
Late Elementary School Age (8-12 Years)
At this age, you can explain your child’s diagnosis in a little more detail. Explain that IBD is a condition where their digestive system becomes inflamed, being sure to use age-appropriate terms like "inflammation" instead of complex medical jargon. Ensure your child understands that the GI tract is responsible for the digestion of food, absorption of nutrients, and elimination of waste. Explain that the GI tract starts at the mouth and continues until the rectum, and the inflammation in the GI tract is what is causing symptoms. Because your child is able to understand more at this age, you can begin to expect a lot more questions. As previously discussed, be honest and patient in answering them. If you do not know an answer to a question, do not make the answer up! Instead, walk through the process of finding the answer to the question together. Call your child’s doctor’s office or speak with another healthcare professional. You can also use diagrams, pamphlets from your doctor’s office, or trusted educational websites geared towards children to clarify any questions. Walk through the process of determining the answer together. This gives your child the proper foundation for navigating their condition independently in the future. Additionally, going forward, make sure to involve your child in the process of managing their IBD as much as you can. Discuss treatment options and involve them in decisions when appropriate. This can not only teach them skills they will need to independently manage their condition in the future, but it will also help them feel a sense of control over their diagnosis.
Teenagers (13-18 Years)
Teenagers can grasp more complex concepts, therefore, be sure to explain IBD to them in much more detail, including IBD’s impact on daily life, potential triggers, and the importance of medication and diet. You and your teenager are a team! It is important to note that after the initial conversations about IBD, start to encourage your child to take more responsibility for managing their health. You can do this through continued conversations in which you teach your child how to track symptoms, manage medications, and communicate with doctors. Ensure your child can name and take all their scheduled medications independently, understand and navigate health insurance, schedule appointments for themselves, and talk to medical professionals about their symptoms/treatment options. As you encourage your child to become more independent in managing their health, be sure to acknowledge that the emotional aspect of living with a chronic condition may begin to impact your child more. Address this concern with your child by thoroughly discussing how to cope with stress, anxiety, and any feelings of isolation, and encourage them to seek support from friends, family, or support groups. Remember, your child will need to be able to independently manage their condition soon. As a parent or caregiver, you can give them the tools and building blocks to do so from the very first conversations you have about IBD.
Tip #3: Understand the diagnosis.
Before you can have serious discussions with your child about IBD, it's essential to have some knowledge of the diagnosis yourself. IBD is a complex condition. Do some research to learn about its symptoms, treatment options, and what to expect in terms of quality of life and daily routines. This knowledge will enable you to answer your child's questions with confidence and provide them with the most accurate information. However, remember that you do not have to know all the answers, and if you are unable to answer a question, be honest with your child. As mentioned earlier, let your child know that you are unsure, and walk through the process of finding the answer together! It’s okay to say contact a healthcare professional together or find an answer on a trusted website when appropriate.
Tip #4: Normalize your child’s feelings.
Let your child know that it's normal to feel a range of emotions, including fear, sadness, or anger. Offer reassurance that these feelings are valid and that you're there to support them. If your child does express their emotions, let them know that they are already showing incredible strength and courage to do so. Give them praise for sharing their true feelings. After offering praise, extend support by guiding and encouraging your child to focus on what they can control. Emphasize that while some aspects of IBD may be out of their control, there are actions they can take to manage their condition, such as following a treatment plan, maintaining a healthy lifestyle, and seeking support from healthcare professionals. Again, reassure your child of your continued love and support.
Tip #5: Give your child some encouraging facts.
When you start to have those initial conversations about IBD with your child, it is important for your child to know a few encouraging facts early on.
Tip #6: Involve healthcare professionals.
Your child's healthcare team can play a vital role in helping them understand and manage their IBD. Consider involving your child’s pediatric gastroenterologist, nurse, or child life specialist to further explain the diagnosis, medications, and treatment options to your child. These professionals are experienced in communicating with children and can provide valuable support and information. They also may be able to direct you and your child to age-appropriate resources and educational materials for IBD, such as websites, books, pamphlets, or organizations.
Tip #7: Connect with support networks.
IBD Connect can offer you valuable resources, support groups, and educational materials to help you navigate the journey of talking with your child about their IBD diagnosis. Consider reaching out to us to connect with other parents and children who have gone through similar experiences. Sharing stories and tips can help both you and your child feel less isolated and more informed. Getting involved in support groups can also give your child the opportunity to meet other children with IBD. The support, camaraderie, and understanding offered from peers becomes increasingly important as your child ages. Start building connections now!
Hopefully, the information on this page gives you a little more confidence in your ability to have conversations about IBD with your child. Remember, telling your child about their IBD diagnosis is a process that evolves as they grow. Tailor your conversations to their age and maturity level, and remember to provide ongoing support and reassurance. Keep the lines of communication open, so they feel comfortable discussing their feelings, concerns, and questions with you. Together, you can navigate the challenges of IBD as a team, ensuring your child receives the care and understanding they need to thrive. If you would like more information or support, feel free to email me or contact another member of the IBD Connect team through our main website. My email address is linked below. If you are interested in connecting with a support group to discuss topics like this one more thoroughly and gain some practical insight, feel free to click the link below for more information! Finally, I would just like to give one final reminder not to use this page as a substitute for a professional medical opinion. For more detailed information regarding IBD or if you have questions pertaining to your child’s individual treatment plan, please seek out the professional medical advice of your child’s doctor. Stay strong IBD Warrior families and go tackle those tough conversations with confidence!
Hi! My name is Emily Fournier, and I am a wife, mom, and registered nurse currently living in MA. I graduated with my Bachelor’s Degree in Nursing in May of 2020. Since graduation, I have had experience working as a registered nurse in both a hospital intensive care unit and a community health center. Throughout my nursing career, I have had several opportunities to care for IBD patients of all ages, which has allowed me to gain a thorough understanding of IBD from a medical perspective. Through my friendship with an individual diagnosed with Crohn's disease at a young age, I have also been able to see how IBD affects every aspect of an individual, whether it be physically, socially, mentally, or emotionally. With Emily’s Gut Check, I hope to combine my medical expertise with a more holistic approach to IBD care in order to provide support and encouragement to anyone affected by IBD, but especially to parents of a child diagnosed with IBD. Please do not hesitate to reach out to me at firstname.lastname@example.org if you have any questions, need advice, or have an idea for a blog topic to cover. Thank you all for being on this journey with me!