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CHILDREN’S HEALTH

Empowering Children to Participate in their Health Care

By Bethany Ziss, MD - AHN Pediatrics Bloomfield

What is the perfect time to empower kids to take a larger role in

their own health care? Of course, we don’t drop off a toddler alone to calmly describe their symptoms of an ear infection and commit to a week of amoxicillin. But how does a child get from there to the point where they are a young adult who knows how to make an appointment and contact the pharmacy for refills? Learning to participate in health care decisions is a skill that increases with maturity and improves with practice.

In 2016, the American Academy of Pediatrics section on Bioethics recommended that children be increasingly involved in discussions of informed consent as they develop. While children cannot “consent,” they can often agree, or “assent” to treatment decisions.

Sometimes I find parents are surprised when I speak directly with children about their experiences at school, trouble falling asleep, or trying medication for focus. Many of my patients have disabilities which affect learning and communication, which can make involvement in health care decisions more challenging. It’s a challenge worth taking. Starting at a young age, I often tell

my patients that their input is vital because “you’re the only person inside your brain and your body.”

Here are some tips to help children better understand their health and participate increasingly in making decisions about their brains and bodies.

Preschool children:

Very young children cannot make informed decisions, and often advocate by saying “no." But there are ways to get even preschoolers involved before, during, and after a medical visit.

Discuss the plan prior to a medical visit so your child knows what to expect. Young children are often most afraid of pain and separation from caregivers. Daniel Tiger has excellent episodes about going to a well visit, a sick visit, and getting a vaccination.

Young children who can’t describe symptoms on their own may be able to nod or shake their head when asked specific questions.

Pick two options so your child can make a choice (a good strategy in life in general): > Vaccine in which arm? > Sit on parent’s lap or on the table?

Children this age can start to understand any chronic conditions in simple terms and advocate for their needs: > “Does this have eggs? I’m allergic to eggs.”

If medications are needed, your child may be able to choose between a liquid or chewable, or pick a flavor to be added at the pharmacy.

Elementary aged children:

Older children can be involved increasingly as they mature. They often have a lot of questions and curiosity about their health and what our medical terms mean.

Ask your child ahead of time if they want to explain any problems or symptoms to the health care provider or if they want you to do the explaining

Children this age may not want to talk about body parts or functions they think of as “private.” You may need to balance their request for privacy with the need to provide complete information.

Pain scales can be confusing. Another way to think about pain or other symptoms might be: > Does it make you stop doing fun things? > Is it better or worse than yesterday? > Does anything make it better?

Elementary children can usually learn the names of any chronic condition they have and an age-appropriate explanation. They may be able to take increasing responsibility for management with support and supervision, for example carrying an inhaler at school and knowing when and how to use it. If your child sees a medical specialist, they may be able to recommend a good book to help explain a chronic diagnosis.

Teenagers:

Teens are better able to understand the risks and benefits of medical decisions, but may not have the impulse-control and judgment to make thoughtful choices, especially if they do not see an immediate benefit or problem. Teens may “know” they need to follow a specific diet or benefit from taking medication but not follow through, especially in social situations.

Most teens will want to spend part of a health care visit speaking with the provider alone.

Explain what confidentiality means and what a health care provider might have to disclose.

Teens should know the names and reasons for any routine medications they take. If a teen is not able to remember, or if treatment plans change frequently, consider keeping a list in the wallet or phone.

Many teens are able to take some responsibility for taking regular medication, but adult supervision is usually still needed. This is especially true for medications which need to be taken at specific times of day.

Teens with chronic conditions may find in-person or online support groups helpful.

Bethany Ziss, MD, began her career as the attending physician in Developmental and Behavioral Pediatrics at Greenville Health System in South Carolina. During her time at Greenville Health System, she cared for children with developmental disabilities and presented at Grand Rounds on various developmental pediatric topics. Dr. Ziss has a strong background in disability advocacy, and throughout her career she has worked to bring a neuro-diversity and disability community perspective to her clinical care.

Older children can be involved increasingly as they mature. They often have a lot of questions and curiosity about their health and what our medical terms mean.

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