Youth Thoughts & Opinions



Hear from our youth. 

What's it like to be a sick kid?

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Why do kids participate in clinical research?

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How does iCAN

inspire me?

2019 Summit Award


Hear from Kaylee 

Providers should speak directly to me and not my parent. I’ve had to wave my arms and say “I’m right here!”

One time a nurse came in on his day off just to play Wii with me.

I vouched for my mom when the doctors didn’t listen to her. She’s with me every day, all day long.

My nurse practitioner talks about stuff way beyond my diagnosis – it borders on gossip! What’s happening at school, friends, etc… it makes me want to go to clinic.

Nurses are the unsung heroes.

I like it when my physician introduces himself and says “Call me John”.

We went to my NP’s retirement party; she was pretty young when I started seeing her – she’d been with me throughout most of my life.

It’s always kind of funny when the nurse says “I hope I never see you again.”

Don’t make up an answer. I’d rather you say you don’t know. I can tell if you are holding back an answer. I don’t want pity.

I don’t like it when the doctors talk over me. You have to learn to advocate for yourself.

My doctor retired; I still text him when I get good test results and he texts me back “good job!”

I asked “am I going to die?” and my nurse said “yes.” – I started crying.

I am a part of the future who wants to make a difference.

They restricted my visitors because I needed rest. (The rest of the group moaned loudly and all said “I hate it when they do that!”)

My nurse wasn’t a sugar-coater. I had three shunt revisions in a month and said “I’m probably going to be back here in a month” and she said “you probably are.”

I love working with Residents. When they admit what they’re scared of – that was really eye-opening for me.

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