Guest Post by Nancy Kassam-Adams, PhD.


At the heart of trauma-informed and patient/family-centered care is the notion that the patient’s own experience matters.  How do we find out what kids are thinking and feeling when they are in the Emergency Department, admitted to the hospital, or back home and dealing with ongoing medical challenges and recovery?  Of course, parents can be a great source of information on what is going on with their child.  But whenever possible, we need to ask kids themselves about their experiences and preferences during and after hospital care.




Here are a few recent resources and projects taking on this challenge – finding out from kids themselves what they are thinking and feeling and what they want from their healthcare team:


1 - Just ask: What matters to you? 

Drs. Nishma Manek and Lucy Pickard report in the Institute for Healthcare Improvement (IHI) Improvement Blog on hospitals that are undertaking an effort to ask pediatric patients not “what is the matter?”  but “what matters to you?”  One example is a Scottish hospital that invites each pediatric patient to create a “What Matters to Me” poster.  Children draw or write to let staff know what they care about: “Explain what is happening to me” or “I like that they let my mummy sleep next to me”.   Drs. Manek and Pickard suggest a 3 stage approach: Ask what matters. Listen to what matters. Do what matters.  


2 – Gather systematic data 

In a recent opinion piece, Dr. Nancy Ryan-Wenger asks a rather important question: Where are the patients in pediatric patient satisfaction surveys?   Most hospitals contract with independent vendors to conduct satisfaction surveys after a patient is discharged home. But for pediatric patients, the reporter is the parent or caretaker – an important voice to be sure, but not the voice of the child.  What would it take to gather the views of child patients about their hospital experiences?  Dr. Ryan-Wenger’s research has shown that children can report on their experiences, and has documented some of the things that children want (and don’t want) from the nurses who take care of them in the hospital. For example, in a survey of nearly 500 hospitalized children her team found that children valued nurses interacting with them, and really did not like being woken up for care in the middle of the night. 


3 – Develop a game! 

Members of our team at the Children’s Hospital of Philadelphia are creating a game-based system that will invite children to report on key symptoms and recovery markers after they go home from the ED or the hospital.  As children play the online game, they will also rate pain, stress, or other symptoms relevant to their illness or injury.  The system will help both parents and health care providers get a better sense of when a child is recovering well, and when additional follow-up is needed.  


What would we learn if we asked each child we take care of to tell us what matters to them? What is your organization doing to hear from children themselves about their experiences?  Share your ideas on our Facebook page!