Keeping Your Child’s Voice at the Center of Care

Setting priorities together with your child strengthens the process and empowers them to feel like more than just a patient .

Parents receive a lot of advice when managing medical care for their child, so it’s important to stay grounded in clear priorities. And if it’s overwhelming and confusing for adults, it’s even more difficult for a child.

A child’s perspective on treatment focuses on the immediate. They want to know if it will hurt, or if they’ll have to give up activities they love, or if it will affect the way they look. And it may be hard for them to balance short-term discomfort with long-term benefits. (Admittedly, a challenging mindset even for adults.)

Kids and teens also have the extra challenge of making their voice heard among the avalanche of advice, warnings, and opinions of the adults in their lives.

Of course, children and adolescents are not equipped to make such important decisions alone. Everyone benefits from a team approach, and understanding the patient’s perspective focuses the team on the real person at the heart of treatment. That’s why keeping the child’s voice at the center of the discussion is critical.

Treatment is most effective with clear goals, and that process is stronger when parents and children collaborate in defining those goals. Communication about the meaning of treatment can happen at any age, and the older your child, the more thoughtful input they can offer.

By asking your child’s opinion, you’ll gain insight into what their priorities are — reducing pain or nausea, returning to school, regaining strength. You’ll see how they understand their illness and its implications. And, you’ll be emphasizing that they are at the center of all of this medical management.

Just the act of asking your child what they want is powerful. Here are some questions to spark conversation:

• What do you want other people to understand about you because of your condition?

No matter their age, your child’s self-image is shaped by their experience. Understanding how a child wants to be seen can point to ways families and the medical team can best support the child.

For example, your son says he wants people to know that he can do many things for himself even if he’s using a wheelchair. Maybe this spurs physical therapy goals to strengthen his independence in daily living skills, or leads to a conversation with his teachers about how and when to let him work on his own.

• If you could wave a magic wand, what one thing would you want to change about how you live with your illness?

Even if the answer seems implausible, it still can illuminate your child’s thinking.

For example, your daughter says she hates the daily blood tests for her diabetes. While it may not be possible to eliminate testing, look for what’s underneath the sentiment. Is she embarrassed about others knowing? Does she dread hearing the results because it might restrict something in her life? Listening for more of the “why” could suggest more targeted options, and will definitely give you insight into her feelings.

• What do you want to learn about your illness?

Your child’s input will be better as they appreciate more about the science behind the illness, the purpose of the medications, tests, or procedures. Neither of you have to be an expert in biology or chemistry. Your child’s doctor is a good starting point for explaining the science with simple visuals and descriptions that suit your child’s needs. Support groups or foundations dedicated to the illness may also have resources that can help.

• Do you have questions about how your illness will affect you in the future?

This can be tricky sometimes because no one, understandably, wants to scare a child with dire outcomes or even uncertainty. However, it’s also possible for any patient to imagine much worse scenarios when they don’t have enough information.

Focus on answering the specific question in front of you, honestly, and within the framework of your values and your child’s development.

The hard truth is that you won’t be able to resolve every issue that questions raise, but you may find that conversation stimulates a re-jiggering of some priorities, or sparks creative problem-solving that you hadn’t previously explored.

Most importantly, opening the dialogue creates greater trust between you and your child if they see treatment as something that responds to their perspective, and not just something controlled by the adults in their life.

And, understanding the larger purpose can fuel their fortitude to push through the hard part for a greater good.

Finally, collaborating with your child will lay a foundation for your child to be empowered as a thoughtful partner in his or her own care.

How do you involve your child in goal-setting and decision-making? What questions do you ask? What questions do they want to know, and how does that impact the choices for their care? Leave a comment to keep the conversation going.