Self-advocacy - learning to communicate independently with your transplant team- is a big part of transitioning to adult care. Many teens and young adults build these skills over time, with support from their caregivers - and lots of practice.
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Here are some things you can do to feel more comfortable communicating with your care team:
Build your health knowledge
Understanding your health is a big part of taking charge of your transplant care. Learning about your condition, why you needed a transplant, and the medicines or treatments you take every day helps you feel more confident and in control. If you’re dealing with ongoing symptoms, it can also help to explore the different treatment options available. Stick with trusted sources—like the AST Transition Toolkit or other national groups—so you know the information is reliable. And whenever your healthcare team gives you handouts, links, or instructions, take some time to read through them. The more you know, the easier it becomes to speak up for yourself and make decisions about your health.
Build connection
Getting comfortable with your care team makes a huge difference. Try to learn who everyone is and how to reach them when you have questions. Ask your caregivers to help you contact them until you feel ready to do it on your own. Connecting with peer support or advocacy groups can also be helpful—you’ll meet other teens who understand what transplant life is like. You can ask them for tips on how they talk with their transplant team. During appointments, it’s OK to ask your family to back you up or help you remember what you want to say. And if you ever feel unsure about your needs or emotions, asking to meet with your social worker or psychologist can give you extra support and guidance.
Some tips for building advocacy skills during your routine visits:
Before the visit:
- Prepare any questions you have for your team. It may help to write them down or keep them in the notes tab of your phone.
- Be sure to know your current medications and dosages. It’s OK to have them written down in a list or in an app.
- Keep track of any medication side effects, difficulty taking medications, and any recent illnesses.
- Ask a support person to accompany you to the visit, if helpful, or review questions with your caregiver before the appointment.
Set the stage for effective communication with your healthcare team:
You may choose to share your preferred name, pronouns, or other helpful self-identifiers.
- Speak in a calm, direct, and respectful manner.
- If it’s helpful, have a support person with you at your visit. Decide before the visit how to signal you need their help communicating with your team.
Share information
- Be honest about any concerns or symptoms that you have.
- Be honest about how you are doing taking your medications as prescribed, and about any missed doses. It helps your team make better decisions about your care.
Ask questions
- Ask your team to repeat information as needed, and ask for clarification if you are unsure what terms mean or what the plan is.
- It is OK to ask why your team is making certain decisions (“Can you tell me why you have ordered that blood test?”)
Speak up
Sometimes you may not understand why your team is recommending a medication, test, or treatment, or you may disagree with the plan. Here are some tips for communication:
- Ask for clarification. You can say something like: “Can you help me understand why you are recommending this?”
- Share any past experiences that may be impacting how you are feeling about the plan. You can say something like: “I’ve taken a similar medication before, and had a bad reaction. Can you help me understand why you think this would be different?”
- Be honest about how you are feeling about the plan. Tell your team if you are worried about side effects, or feel like the treatment will not work for you with your schedule or care needs.
- Ask about alternatives. You can say things like: “Are there other options we can try?” or “Would it be reasonable to do (this) first and then (that)?”
- Ask for a break or a pause to consider the option first. You can say “I need a minute to think about this” or “I would like to talk this over with my caregiver before making a decision.”
- Once you have agreed on a plan, repeat it back to the doctor to make sure you are on the same page. You can say, “I’m going to explain what I heard so I know I understood everything,” or “So just to make sure I understand, I should do (this)?”
Taking an active role in advocating for your transplant care—and your overall health—is an important part of preparing for the transition to adult care. As you move through your teen years, you’ll work more closely with your transplant team, other healthcare providers, and your caregivers to build the skills and confidence needed to advocate for yourself and make informed decisions about your health.
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