Got an Idea? Your Hospital is Listening
By Paint Her in Color Founder, Laura Spiegel
It’s 2018, and I’m watching a teenage girl swirl a lollipop as she chats with the receptionist. I inch my daughter closer to the door. The waiting room is tight, and it’s hard to keep the recommended six-foot distance from other patients with cystic fibrosis. The smell of grape engulfs me. Everyone in the CF clinic is supposed to wear a face mask to prevent cross-infection, but this girl’s obviously forgotten. I look around. There’s no signage to serve as a reminder.
I make a mental note.
It’s 2019, and I’m waiting for the elevator to take us from the parking garage to the hospital. A man sneezes as he makes his way toward us. When the doors part, I motion him in and fumble an excuse. “We’ll wait for the next one,” I say. What I really mean is, “No way we’re sharing air.” Then it hits me. The face mask stations at the hospital entrance aren’t enough. We should also have them at the parking garage elevator banks. That way, we can protect ourselves before we share tight spaces with others.
I make a mental note.
It’s 2020, and I’m headed to Radiology for a quick peek down my daughter’s throat. It’s COVID season, and face masks abound. Just one problem. The masks at the check-in desk are in a box. A box into which countless fingers have reached.
I grab six to be safe and make a mental note.
What am I doing with my mental notes? I’m taking them to my hospital’s Family Advisory Council to help improve the experience of care for families.
Many hospital systems in the U.S. are working to deliver “family-centered care,” an approach that puts patients and families at the center of the care team. We see family-centered care in action when our care teams allow ample time for our questions. When they listen respectfully to our concerns. When they encourage us to be a part of the decision-making process where appropriate.
Many hospitals are also asking families to help them improve the overall experience of care. Completing a survey after an office visit or hospital stay is one way to provide feedback. Another way is to join a Family Advisory Council, a group of engaged families who partner with hospital leadership to provide feedback and create change.
As a Family Advisory Council participant, you can:
Give feedback on hospital protocols, programs, and communications
Develop parent mentoring programs
Compile helpful resources for newly diagnosed families
Assist with hospital quality improvement efforts
Participate in care team training
Share ideas for improving the overall experience of care
As a member of my hospital’s Cystic Fibrosis Family Advisory Board, I shared my concern about mask wearing in the waiting room. I was rewarded with this. A polite reminder that’s so big you can’t miss it!
As a member of the pediatric Patient and Family Advisory Council (PFAC), I elevated my elevator concerns. Protective mask stations were later installed at the elevator banks in the parking garage.
This same Council also helped the hospital reconfigure its mask distribution process for COVID-19. Our check-in desks now have sanitation stations with single-distribution masks and more.
In an environment where I often feel an immense lack of control, the opportunity to create meaningful change has been wonderful. And the more I’ve gotten to know the leaders of our local children’s hospital, the more I realize how much they care. Yes, they have metrics to hit and operational constraints. No, they can’t move mountains. But many of them are parents, too, and they bring their passion to work every day.
They also rely on the voices of families to help them understand the experience of care as we see it. Not as it is on paper. Not as it is on a scorecard. But as we actually experience it.
If you’re a parent of a child with a complex health care need, I encourage you to find ways to make your voice heard. Your lived experience goes far beyond what can be learned in a textbook or boardroom. By joining Family Advisory Councils and speaking up, you can help address issues that you’re passionate about while helping other families along the way.
Trust me. Your hospital is listening.