Becoming More Independent in Making Decisions about Your Health

A helpful way to learn how to make health decisions for yourself is to take them one step at a time. Just as educators have a “teacher’s guide” to help them better deliver their lessons, here we’re guiding you with different ways to partner with your parent/caregiver(s) and health care team. You want them to see you as someone increasingly prepared to take more ownership over your health decisions. As you succeed your parents may become more comfortable supporting your increasing independence in other areas!

Why Now?

Whether you are in middle school or getting ready to launch into college or the work world, now is the time to stretch into new ways of managing your health decisions. Making these decisions is a key step in your growing independence. The word “growing” is critical here.  You don’t have to figure it all out right away. You’ll learn alongside your parents and medical team. 

Developing these decision-making skills as a teen is important for two reasons. First, in a few years as a young adult, you’ll be working independently with your healthcare team. Second, your parent/caregiver and health care clinicians can guide you now and give you room to make mistakes. At the same time, you can confidently know they’ll protect you from harm. 

We all need trusted advisors in our lives, no matter how old we are or how many experiences we’ve had. We do better when we receive guidance during challenging moments or when making important decisions. But as a teen, so much about navigating health decisions is new. You deserve a support system that will help you learn how to make these important decisions. As role models, your adult advisors should help you see that we all make mistakes when we veer into new territory. We learn each time we make a mistake and try to do better next time.

Recognize Your Developing Strengths

Preparing to learn new things can help build confidence by thinking through the strengths you already have and the ones you are developing precisely because of the unique journey you are personally experiencing.

Having a chronic health condition can affect your life in many ways. It makes you have to pay attention to your health in ways your friends may have never had to think about. It may even prevent you from participating in activities that are important to you. Recognizing the strengths it also builds in you does not deny these challenges. It is ok to feel frustration – even occasional anger – while still seeing the strengths you are developing. 

A chronic condition can build core strengths that will benefit you throughout life. Read through this partial list of strengths and think about whether the point already describes you. Then, consider how much increasing ownership over your health decisions will build this strength within you.

• You have to learn to manage things other people your age never need to consider. As a result, you will develop skills and resilience that will serve you well into the future. 
• You will understand the importance of health, and that may make you experience gratitude for the simple things others don’t even notice.  
• You are learning that people support each other to get through challenging times, enabling you to withstand difficulties throughout your life. You’ll know that together we are stronger.  
• You are learning that complex decisions need to be made after thoroughly considering various options, and that will make you wiser and more thoughtful.   
• You are learning that experiences that feel overwhelming at first can be mastered when you break bigger problems into smaller, manageable pieces. Improvements can come one step at a time and can build upon one another. While waiting can be frustrating, it also helps you to learn patience, which will enable you to manage temporary disappointments in your life.
• You’ll learn that sometimes you need to advocate for yourself. You’ll benefit from learning to speak up with a clearer voice throughout your lifetime.

Don’t let your chronic health condition define you. You are a growing, developing human who needs to take on new responsibilities in many areas of your life. You are supposed to stretch into new territories. As you become more knowledgeable about managing your health, you can increasingly control it instead of feeling like it controls you. This will open up lots of emotional energy for you to take on other challenges and opportunities. 

At the same time, you might worry that you’ll make a mistake that could harm your health. The tension between wanting to stretch and the desire to stay healthy and safe may create confusing feelings for you. The good news is you’ve got a team on your side to help guide you and watch out for your safety. Again, that’s why NOW is the right time to get started.  

Help Your Parents Support Your Growing Role in Making Health Care Decisions

A good partnership has a shared mission or purpose. Both you and your parents share the goal of learning to make wise decisions about your health management. Your parents know you’ll be managing your health condition in partnership with your health clinicians in a matter of time. However, they’ve also earned the right to be protective of you. After all, they’ve likely spent plenty of time and energy keeping you healthy and safe. So, it is natural and expected that they want you to gain more control in a way that feels safe. The members of your healthcare team are experts at working with families to give adolescents more ownership over their conditions in ways that feel comfortable for parents. 

Your Role in Building Your Decision-Making Skills

Your health care clinicians can support your parents to guide you in this process. But it is YOU who can make this productive for you and comfortable for your parent. Here are three tips to consider:

• Start in a way that you can’t fail. You are the expert on you. Knowing that does more than highlight your power; it tells you where to begin taking ownership of your health condition. You are not supposed to be the medical expert. That’s why you learn from your health providers. You are not supposed to be parenting yourself. That is why you have adults whose role is to be protective of you. Only you know how you feel and how your condition affects your life. The only way your health team and parents can develop the best plan is by hearing your concerns and experiences. Being a self-advocate means truthfully sharing the expertise only you possess. 
• State clearly that you welcome guidance and protection. Your parent(s) and healthcare team will want to honor your efforts at becoming more independent in your decision-making. You don’t want them sitting on the sidelines, worried they’ll offend you by voicing their thoughts. Be clear that you are counting on their oversight. Watch them breathe easier when you say this. Then, prove that you welcome their guidance by being an active listener. When adults feel heard, they feel better about the decisions teens make. 
• Set yourself up to succeed one step at a time. Every time you demonstrate the ability to handle a new responsibility, the adults in your life will be ready to offer you more privileges. On the other hand, when you fail, they might slow down your progress. Stretch … but not further than you think you can confidently handle. When everyone is clear that you know that ownership over your health condition can come slowly, they’ll let you set the pace. If you push for too much too fast, it will make them nervous, and they may take away some measure of your growing independence. But if you fail – as we all do – while setting a reasonable goal for yourself, they’ll jump in to help you recover and learn from your mistakes. 

Gaining independence is an exciting part of life for all adolescents. It is also anxiety-provoking for most people. But know there is never a point where you’ll stop learning and growing. 

If you found this article helpful because you’re exploring how to increase your involvement in your health care, this is an excellent opportunity to encourage your parents to partner with you. Invite them to check out these resources.

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.