Abstract
Keywords: Patient participation, pediatrics, clinician-patient interaction, agency, shared decision making, communication, relationship.
Citation: Greene A. Participatory pediatrics. J Participat Med. 2015 Jan 14; 7:e1.
Published: January 14, 2015.
Competing Interests: The author has declared that no competing interests exist.
Taking care of children might seem like an area of medicine where paternalism should be welcomed and accepted. But even in pediatrics, building agency and participation can be particularly powerful. Agency is the ability to choose and to act on one’s choices.
From the day parents first drive home with their baby, they are preparing, consciously or not, for that child to one day take the car keys and have real decision-making power. We try to set them up to make wise decisions. We build relationships with them we hope they will want to choose to maintain. But the day will come when they are truly in charge. We want that day to come. We prepare for it by recognizing and encouraging their agency long, long before.
Many of the most important rapidly increasing children’s health problems are related to what and how kids eat. One of my focus activities is to teach kids to love healthy foods.
I’ve learned that many kids in the US don’t like fresh tomatoes. They may eat them, but they don’t love them. We’ve learned that if you hand a child a knife (responsibly!) and let them slice the tomato, their likely enjoyment goes up immediately.
And if they go out into a garden and pick a tomato that is ripe and then slice it, the likelihood goes up even more. But here’s the game changer: If they plant a tomato and watch it grow, water it, remain involved, then pick it when it’s ripe and slice it, an otherwise indifferent or negative experience becomes something exciting, special, and fabulous. They are likely to love it.
Often our health care system is saying, “Eat your tomatoes.” Take your medicine. Do what the doctor orders.
It’s time for medicine to hand the knife over to patients – responsibly. To remove obstacles to people who have the real tools, the real information they need to be able to manage their own healthcare – something we call Participatory Medicine.
Better yet is for people, even kids, to go out and pick tomatoes. To go online, to connect with other patients, to gather information and solutions to their health concerns.
But the most powerful, the game changer, is when people, even children, become creators and producers of health, not just consumers, launching initiatives for themselves or for others, then nurturing them, and watching them grow and change the world.
Consider the power of Cassidy Megan, a 10-year old with epilepsy who started Purple Day to change the experience of epilepsy for kids. Or Hannah Alper, a 9-year-old who took action that was the result of her concern for the impact of the environment on animals’ health, and our own.
Be moved by Max Wallack, who helped care for his grandmother with Alzheimer’s while he was a kid. Now at 18, he’s a light to others going through this problem in their families – and is already an Alzheimer’s researcher who will graduate from college in May. He plans to make this his life’s work, and already has acceptances to medical school in hand.
Don’t miss Morgan Gleason, whose YouTube video, “I am a patient and I need to be heard,” has over 50,000 views.
Or Brittany Wenger, the girl who taught a computer to diagnose breast cancer while she was still in middle school. Or Kajmere Houchins, the young girl with cancer who at 6-years-old learned how to change her own dressing of her double-lumen Hickman catheter that protruded from her chest. Listen to the stories of any of the speakers at TEDx Teen. Be inspired.
All children deserve respect (all patients, too). They don’t need to be geniuses. All they need is to be involved, to be taken seriously, and to be encouraged. Little steps of participation can make a big difference in building a healthy life. I love toys like Jerry the Diabetic Bear and tools like Kurbo (which I’m helping advise) that welcome kids to begin to take charge.
As a pediatrician, I want to be a resource for kids, to be the kind of involved and available physician that they want to engage with, and to help remove obstacles to their growing agency.
Copyright: © 2015 Alan Greene. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.