What is our goal for treatment? Seems like a simple question, but the answer is often as complicated as the illness itself. Treatment is a broad term that encompasses everything from medication to testing to diet to surgery. And there are upsides and downsides to every treatment choice. Side effects. Risks. Limitations. Parents receive a lot of advice, and it can feel overwhelming and confusing, so it’s important to stay grounded in what you’re trying to accomplish.
And if it’s confusing for adults with mature perspective and sophisticated judgment, it’s even more difficult for your child. His or her perspective on treatment is 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. Kids and adolescents are wired to focus on the right now, so it may be hard for them to balance short-term discomfort with long-term benefits. (Admittedly, a mindset that is hard even for adults.)
Of course, children and adolescents are not equipped to make such important decisions alone, but neither are parents. Treatment is most effective with clear goals, and that process works best 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. By asking you’ll gain greater insight into how they understand their illness and its implications. And, you’ll be sending the message that you recognize that they are at the center of all of this medical management.
Just the act of asking your child questions about what they want is powerful. Here are some questions that may get you started:
- 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 they want to be seen can reveal how you can strengthen their best self. 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.
- If you could wave a magic wand, what one thing would you want to change about how you live with your illness?
Don’t’ worry if the answer seems implausible. It still can illuminate their perspective. For example, your daughter says she hates the daily blood test 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 point to more targeted options, and will definitely give insight into her feelings.
- What do you want to learn about your illness?
Your child’s input will be better as he or she appreciates more (in an age appropriate way) about the science behind the illness, the purpose of the medications, tests, or procedures. Don’t worry if you’re not an expert in biology or chemistry. Your child’s doctor is a good starting point for explaining the science to lay people with 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 parents, understandably, don’t want to scare their child with dire outcomes or even uncertainty. And while a positive, can-do attitude is often a great motivator in the face of challenges, It’s also possible for a patient to imagine much worse scenarios when they don’t have enough information. Think of it like sex education – you answer 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.
This blog was originally published on Caryn’s blog, “Any Way the Wind Blows.”
Caryn Anthony is a nonprofit consultant and executive coach from Silver Spring, MD, and is also a volunteer member of the Patient and Family Advisory Council for Children’s National Medical System. She is the author of “Any Way the Wind Blows,”—a blog geared for families raising a child with a significant medical condition. Her writing has also appeared in The Huffington Post, Grown and Flown, and Modern Loss.