SAN FRANCISCO (KCBS RADIO) – The new Wellness Center for Youth with Chronic Conditions at UCSF Benioff Children’s Hospitals is open with the goal of helping kids grow up with their conditions.
The mission of the center is simple.
“What can we do better to help take care of kids with chronic medical conditions?” Dr. Emily von Scheven rhetorically asked KCBS’ Bret Burkhart on this week’s episode of As Prescribed.
Dr. von Scheven is the founder and director of this center and is also a pediatric rheumatologist.
“This center is there to serve kids with all kinds of medical problems that are longstanding,” she explained. “And it turns out that they have a lot of common needs around just managing life and their future that we aren't always so well equipped to help them with in our sort of current healthcare system.”
The doctor said the center works with young people dealing with a wide range of chronic illnesses – including epilepsy, inflammatory ailments, cancer and many others.
“So what we're really focusing on is the common issues that kids growing up with chronic medical conditions face,” she continued. “It might be the impact of their disease. It might be the impacts of their medicines, either direct or indirect impacts on their body and on their development and their life.”
One effort the center focuses on is the needs of patients beyond their medical needs.
“We did a lot of research in the beginning, and we used what's called human centered design methodology, where we talked to a lot of families, a lot of caregivers, a lot of patients,” Dr. von Scheven explained. “We learned about how traumatizing it can be to just have to keep coming back over and over to the medical center, how isolating it can be to go through life with a disease that other people might not have even heard of, about how much chaos it creates in people's families just trying to navigate the health care system, and the real burden on parents and on families.“
The solution, they learned, was these families wanted a place where they could talk about more than their diseases. One that focused on overall wellness.
“People talk a lot about wellness these days, but if you think about how most people are talking about it in our society, it's kind of like wellness is on one side and illness is on the other, and they're pretty much separate entities,” Dr. von Scheven said. “The problem is, if you think about the child with a treatable but not curable medical condition who's growing up with their illness and carrying it with them potentially for the rest of their life, that kind of leaves them out of wellness, right? We are really trying to figure out how to bring wellness to kids who are growing up with a condition.”
That wellness extends beyond just the patient.
One thing the Wellness Center for Youth with Chronic Conditions does is get the rest of the family involved. An example is online cooking classes to showcase food can be medicine, even having siblings come along and cooking together in a kitchen.
The overall goal for the center is to be a place that doesn’t feel like a hospital.
“We have a community room and a family lounge so patients and caregivers and siblings can spend time together, talking, doing fun things, building community, hopefully really in response to some of the feeling of isolation that we heard about,” Dr. von Scheven explained. “We have some traditional clinic examination rooms where a physical exam would happen, but we have many what we call consult rooms, which are just small rooms for talking. A lot of our work is around talking, and patients don't even need a physical exam. They don't even need to get in a hospital gown, which all kids hate.”
There is also a gym with exercise equipment and a climbing wall where patients can work with physical therapists that's really focused on building their physical fitness as well as their confidence and resilience.
The doctor said after last year’s soft launch, they have been very happy with the results they have seen through the new center. It is a system they hope will help patients successfully take their pediatric conditions and live a fulfilling life with them through adulthood.
“We think that we'll be seeing kids all the way until they transition to adult care,” she explained. “So if they come to us when they're five, they could spend 15 years with us – if they want to. And their needs and desires will probably change over time and they can tap in and out of the different services that we provide over those years as it suits them.”