How to Get Involved in Decision-Making About Your Chronic Condition

Living with a chronic illness as a teenager can be challenging. In addition to frequent doctor’s visits, you may face daily decisions and medical tasks. Managing these decisions and tasks can feel overwhelming. After all, you’re already trying to navigate your social, academic, and personal life. Sometimes it may seem easier to rely on a parent to make those medical decisions and plans for you. However, you need to be involved in your care. By getting involved in decisions, you will feel more confident about your illness and more in control of your treatment plan. This is key because following your treatment plan is critical to staying healthy! Taking on more responsibility can be scary, but adolescence is a good opportunity to take a step at a time and gain confidence while you still have a high level of support and guidance from your parents, health care providers, and other caring adults. 

Here are 5 tips on how to be involved in decision-making at home.

1. Share your opinions and thoughts. Your voice is essential. If a decision is needed, let your parents know what you think. For example, maybe you need to decide how to take a new medication: orally (in the form of a pill) or by injection (in the form of a shot). First, list the pros and cons for each way to take your new medication. Next, ask your parents what they think. Perhaps they have some pros or cons to add to your list that may help clarify the decision. Understand that you may not always have the ‘final say,’ but you can still have a voice in major decisions. Sharing your input shows your parents that you’re ready to take on a more significant role in managing your care. 
2. Know your responsibilities. Discuss with your parents what tasks you can manage independently and what tasks you might need help with at home. You may find it helpful to create a responsibility chart so everyone is on the same page. For example, you may have mastered taking a specific medication every morning. However, when it comes to prescription management, you may still need parental support to ensure refills happen on time. Make this a recurring discussion since responsibilities may need to change as you get older or become busier with school, sports, friends, and more. 
3. Communicate about symptoms or challenges. You know your body best. If you’re experiencing a worrisome symptom or dealing with a new medical challenge, don’t ignore it. Letting your parents know right away is important for timely and effective management. Additionally, these situations are a good opportunity to collaborate on decision-making and problem-solving. Practicing good communication skills can help reduce parent behaviors (like, nagging!) that teens find irritating. 
4. Prevent burnout. Managing a chronic condition can be exhausting. Be open with your parents when you’re feeling overwhelmed. There will be days when you need a parent to jump in and help make more decisions at home. Understand that this doesn’t mean you can’t make those decisions alone anymore. Rather, you just need a break to prioritize your mental health. If you need additional support, talk to your parents about getting connected with a mental health professional. 
5. Connect with other teens. Having a chronic condition can feel isolating. You may feel like you’re the only teen in your school who takes medication or is absent because of multiple doctor appointments. Know that many other teens live with a chronic condition. Talk to your parents about attending a support group or camp where you can connect with others like you. Your peers will likely have some of the most meaningful tips or suggestions about managing a chronic condition as a teen.

It is important to remember that being involved in your care at home is an excellent opportunity to learn and practice decision-making skills. You won’t make the ‘right’ decision every time. And that’s OK. No one is perfect. You learn what to do differently next time when you make a mistake. The goal is to simply get involved. As you take ownership of your condition, you’ll gain confidence and feel more comfortable making decisions and managing your condition on your own. You’ll also be well prepared to interact with your medical team as a young adult and be an active partner in your care. 

Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under Award Number R01NR020005. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.