|Print This Page Email to a Friend|
Parents of children with chronic healthcare needs can feel overwhelmed with various appointments, an influx of complex diagnostic terms, and just the uncertainty of their child’s future. The Pediatric Pulmonary Center (PPC) at Children’s Hospital of Alabama has worked diligently to provide care in a way that eases this stress as much as possible.
The center is a grant-funded facility, one of six created through the Maternal and Child Health Bureau. “One of the great benefits of the PPC is that it has an emphasis on multidisciplinary care and particularly the idea that family is a critical piece of providing the best care for our patients,” states Dr. Brad Troxler, Director of the Pediatric Pulmonary Center and Medical Director of the Pediatric Sleep Disorder Center at Children's.
Dr. Troxler, along with Linda Russo, respiratory therapist turned family faculty member, are progressing the center’s efforts in a number of ways. Having a young adult with chronic healthcare needs herself, Russo brings a unique perspective to the table.
Video Series Covers the Spectrum of Chronic Illness Care
One tool the PPC has developed to help parents navigate the care process is a set of videos. The videos’ content covers things like the initial experiences when a child is first diagnosed, how to cope with a hospitalization, what it means overall to have a child with chronic illness, and how to become an advocate—not just applying their individual experiences to progress change, but across the entire healthcare system.
“It's overwhelming when you're diagnosed or your child is diagnosed with a chronic healthcare problem. But, we realized that those same people are the best advocates for their children and more broadly for changing healthcare,” notes Dr. Troxler. “We really recognize the important voice families have. And, we wanted to help develop tools to give them their voice more powerfully.”
In fact, one of the videos showcases two young adults who have gone the extra mile and achieved a level of advocacy for themselves.
Parents and Patients: Find Your Voice
Communication is a key element in helping families along the care journey. But, it’s inevitable that some of the language circulating among healthcare providers and staff will be confusing—at first. For example, parents might not understand what rounds are, or the difference between an attending physician and a specialist.
Russo urges families to speak up if they’re unsure about anything being discussed, so they can feel more in control. “It's a new language that's being thrown at you in the medical world. There's so much to learn. Just be patient. Talk with everyone. Communication is key to building trust between everyone.”
“When you're with your child at your healthcare provider’s office, speak up. If you don't understand, ask the questions,” adds Dr. Troxler. “That's the first step to really becoming an advocate for you and your child; to ask the questions and start finding your voice.”
**To listen to an in-depth conversation on this topic and learn more about the videos, advocacy opportunities, and chronic illness resources, visit https://www.childrensal.org/podcast.