Discussion Guide for Parents of Children with Inflammatory Bowel Disease

Discussion Guide

For Parents of Children with Inflammatory Bowel Disease

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Important conversations to have with your child with IBD

There are tough conversations most parents and guardians may dread having with their children. Telling your child that he or she must learn to manage an inflammatory bowel disease (IBD) on their own one day isn’t typically the easiest discussion to have with a teenager. Children with IBD will need to develop skills to help them transition to adult care, so that they can learn how to optimize their healthcare, become advocates for their health, and have better disease outcomes.

It is every parent’s dream for their child to handle life’s bumps with minimal damage, while also managing their disease inde­pendently and with confidence. But sometimes parents also need a little help to coach their children so that they can make the best decisions for themselves in the future.

This guide provides tips to help you talk to and support your children as they learn more about their IBD. Look for this symbol throughout this discussion guide for links to additional, helpful, resources.

The Crohn’s & Colitis Foundation provides information for educational purposes only. We encourage you to review this educational material with your health care professional. The Foundation does not provide medical or other health care opinions or services. The inclusion of another organization’s resources or referral to another organization does not represent an endorsement of a particular individual, group, company or product.

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Taking medications as prescribed

Taking several pills a day, or having regular intravenous infusions or injections are probably not on your child’s list of favorite things to do. However, taking medication is an important way for your child to help manage his or her disease. Medication is most effective when taken as prescribed, and this can help control symptoms and inflammation. As a parent you may or may not already take an active role in assisting your child with his or her medication, but stressing the importance of following a medication regimen can help them understand their role in disease management.

State the facts: Ask your doctor or healthcare team to help explain the role medication plays in managing your child’s disease, including the potential impact of not following the treatment plan. You should also know that medi­ cations don’t always work the way we want them to. If the medication stops working, is not as effective as it could be, or your child experiences side effects, it’s important to work with your healthcare team find a treatment plan that works best. Your child is part of this team.

Talk with your child about his or her life goals and interests: You can help your child become more independent and compliant with their medication by understanding his or her interests, hobbies, and daily activities. Not being compliant with their medication can lead to worsened symptoms, making it more difficult for your child to play sports, hang out with friends, or engage in other interests that are an important part of the growing experience.

Put it on the family calendar: Forgetfulness is the primary reason that children/ adolescents miss medication. Setting up a family calendar can be a great way for your child to begin participating in management of his or her disease if he/ she hasn’t al­ready. Have them be proactively involved in writing their medica­ tion schedule on the calendar. If you have an older adolescent, try to encourage them to use a reminder system, an app, or other helpful technology.

Learn from mistakes: We aren’t perfect, and sometimes we do forget or skip out on medications. Whether you or your child may have forgotten, it is important to recognize when these mistakes happen and work together to identify ways to improve any barriers to taking medications. Listen to your child. He or she may offer creative ways to problem solve.

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Seeking emotional support

Parents might be able to sense if their child is having difficulty in coping with their disease. But sometimes it may not be readily apparent. Patients with IBD can look “healthy” but we know that there is so much more than meets the eye. It is always a good idea to check in with your child regularly, and ask questions beyond how they are feeling physically. It is normal for children to experience some stress, sadness, worry, and/or frustration towards their dis­ease. Finding ways to cope with or address these feelings will be a helpful skill for your child.

Show your support: It can be easy to focus on the physical concerns of IBD. Take some time to connect with your child and ask other questions about your child’s life. Check in on things like school, friendships, or other experiences.

Being a patient with IBD can have its ups and downs, especially for adolescents.

Take note of any major changes in your child’s behavior, and talk to your child’s doctor about your concerns.

Give them their space: It can be hard to step back, but if your doctor asks to speak to your child alone, give them that opportunity. Your child may feel comfortable sharing their thoughts and feelings with his or her pediatric gastroenterologist or other member of the healthcare team.

Seek psychosocial services: It is common for children with IBD to have feelings of anxiety or depression. However, the more support your child has in coping with these feelings, the better equipped they will be to learn how to manage these issues in the future. Talk to your child’s doctor or healthcare team about accessing psychosocial services.

Peer to peer connection: Not every child feels comfortable sharing their feel­ ings of depression, anxiety or stress with their parents. Sometimes your child might confide in their peers. This could include other patients going through similar experiences, or other friends that do not necessarily have a connection with IBD. Your child may find these sources of support on their own, or they may look to an adult for guidance. Even if you are not their shoulder to cry on, providing guidance when needed is a great way to show support.

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Handling alcohol and drugs

At some point in your child’s introduction to adulthood, alcohol and/or drugs (whether illegal or illicit) may be something they are exposed to. It’s important to have a conversation with your kids about the damaging effects alcohol and drugs can have on their health, especially as an IBD patient.

Start with your doctor or healthcare team: Your child’s doctor and healthcare team will really be instrumental in helping you explain the damaging effects that alcohol can have on the gastrointestinal tract, including the liver. It may also interfere with IBD medications. Your doctor may bring this up naturally during a visit, or it could be a question you or your child might ask during an appoint­ment. However it is introduced, be sure your child feels he or she un­ derstands the potential risks. This should be a repeated message throughout their care.

Stay positive, and supportive: What parent wouldn’t wish for their child to follow their advice when the child is making important decisions that impact their health. The truth is, your child may not always follow your advice. Your child may need time and more confidence before they feel com­fortable mak­ ing the right decisions for themselves. That is why talking about alcohol and drugs is extremely important. Part of the conversation with your child could include asking how they would handle certain situations. Though it can be uncomfortable for your child (or for you as a parent) to approach this topic, try to reassure them that you have faith in their ability to make deci­sions for themselves in the future. This can help send the message that they can be advocates for their own health and proactive participants in managing their disease. Encourage them as much as possible to surround themselves with positive and supportive peers.

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Thinking about sex and birth control

It’s hard enough talking to your teenage about IBD let alone bringing up sex, pregnancy and birth control. Parents have an important role in setting the tone for future decisions around sexual activity. The first challenge is starting that conversation, but once you do, letting your teenager know they have your support and guidance is crucial.

One of the most difficult decisions many teenagers face is whether to have sex. Let your child know that the decision to be sexually active comes with the responsibility for teenagers to protect themselves from unplanned pregnancy and sexually transmitted diseases (STDs). There are many effective birth con­ trol methods including, birth control pill, condoms, and diaphragm.

It is important to know that Methotrexate can cause birth defects if taken during pregnancy, or if there is a risk of becoming pregnant. Girls taking Methotrexate should be on oral contraceptives. Certain surgeries for IBD may impact sexual function in men or fertility in women. It is important that If your child undergoes surgery for their IBD in the future, it is important that they be open with their doctor and ask about these potential risks.

For general resources on how to talk to your teen about sex, visit the Office of Adolescent Health website.

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Talk to your kids about health insurance

Understanding and managing health insurance needs is a skill that all patients need to learn. Your children may have heard you refer to terms such as “copay,” “deductible” or “pre-authorization,” but it may not be something they are necessarily concerned with at the moment or that they really understand.

After all, your teen is busy coping with their disease. It isn’t too early to help your child understand some general concepts.

As your child becomes an older teen, allow them to participate or listen in with you as you model how to tactfully handle any issues, concerns or questions related to their medical coverage. Seeing that medical insurance coverage is important to you will let them know it should also be important to them.

Tip: You can use the Foundation’s list of appeal letters to help you with requests to the medical insurance company.

Visit our website Set up a learning routine Are there things that you normally have to take care of prior to your child’s healthcare visits, or even your own? From an early age, you can begin educat­ ing your children on your checklist. For example, you might start by letting your child know that before every visit, we need to make sure we have important things with us, and have them participate in ensuring you are prepared, like: • Carrying the medical insurance card • Keeping a list of medications • Knowing the name of the nearest pharmacy for refills • Carrying important letters from the insurance company Overtime, these routine “checklists” can serve as helpful references when your child begins to transition into adult care and handle their own needs.

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Join your child in taking action

Encourage your child and other loved ones to become advocates and join the Crohn’s & Colitis Foundation. For those interested in addressing access to care and health policy issues, the Foundation offers opportunities to engage in feder­al and state-advocacy. You can receive updates on ways you can take action on specific issues by signing up for the Advocacy Network.

Sign up by visiting our advocacy webpage.

Additional resources: • Preparing to Manage IBD on My Own—Infographic • Quiz My IBD Skills online assessment tool • Young Adult Factsheet • www.crohncolitisfoundation.org • www.crohnscolitisfoundation.org/kids-teens • www.crohnscolitisfoundation.org/campus-connection • www.healthcare.gov Don’t lose sight of these resources and have them handy as your child begins their journey towards independence and considers their available options to help them manage their disease on their own.

Uniting to Care & Cure Questions?

Contact the IBD Help Center Monday–Friday, 9:00AM –5:00PM ET 888-694-8872 info@crohnscolitisfoundation.org This resource is supported by an educational grant from AbbVie, Inc.

Additional support is provided through the Crohn’s & Colitis Foundation annual giving program and donors.

Thank you to the patients, caregivers and medical professionals on our Patient Education Advisory Committee for their contributions to this resource.

733 Third Avenue Suite 510 New York, NY 10017 212.685.3440 www.crohnscolitisfoundation.org