To better understand our patient and family experience, I recently began conducting Family-Centered Rounds on the inpatient units in the Children’s Center. A few times a week, I informally sit down to chat with families, asking them simple questions to find out what is going well with their stay, and what could be going better. I think asking from the parent perspective promotes trust and confidence. We’ve both been bedside. I know the challenges my husband and I faced, and I want to hear theirs. We can’t make changes unless we hear from the experts — families and patients themselves — about what the actual inpatient experience is like.
Parents often share the normal concerns: Parking and food costs add up, and it’s difficult to get a restful night’s sleep. While these issues are often shared with a shrug and a frown, I’ve found that parents’ faces light up when they talk about their Johns Hopkins nurses.
As I move from one family to another, regardless of the unit their child is on, I hear repeatedly: Our nurses are exceptional. They are eager to relay stories about the excellent, compassionate care their nurses provide. One parent gushed, “Our nurse is such a good teacher. He takes his time and explains everything in a way I can understand. He isn’t just throwing a book at me to explain her diagnosis. He is walking me through it all, step by step. He is simply amazing.”
Another parent talked about how the simple things sometimes matter the most. This mom and her child had just returned to the unit after a long visit to MRI. Their nurse was waiting at the patient’s door with a large cup of ice chips, the patient’s favorite. That simple gesture made them feel cared for after a long and tiring day.
During this COVID-19 era, our nurses have done it all. On any given day, nurses are asked to go above and beyond. Some days they’re grabbing coffee for an exhausted parent, sometimes they’re scrambling to find a hot meal for a patient and family who missed the dinner cutoff, or for a parent isolating in their child’s room because the patient has COVID-19. Nurses are often the first to notice when their patient’s condition has changed, alerting the medical team and taking action to escalate care. Nurses are our unsung heroes.
We want our nurses in the Children’s Center to know that we see you. Your patients and families see you working long hours, with increasing demands in an ever-changing environment. We see you taking care of our kiddos as if they were your own. We know you’re also doing your best to look out for and take care of us, too. We parents could not get through a hospital stay without you as our partner, teacher and friend. We thank you!
Sue Mead is a parent adviser on the staff of Johns Hopkins Children’s Center and co-chair of the Pediatric Family Advisory Council. Her daughter was successfully treated for a brain tumor at Johns Hopkins in 2006.