Cystic Fibrosis Patient/Parent Workgroup

Treatment and management for cystic fibrosis (CF) has improved dramatically, and people with CF are living longer, fuller lives. Still, families living with CF face unique challenges. They need support to help children stay as healthy and happy as possible throughout childhood and transition smoothly into adult care. At Phoenix Children’s, the Cystic Fibrosis Workgroup gives patients or family members a chance to find creative ways to provide that support — and to improve care and services for themselves and others.

CF Patient/Parent Workgroup members meet quarterly (or sometimes more often) to:

• Respond to specific requests, such as projects, tasks and activities that will help improve CF care
• Discuss opportunities to improve the overall family experience
• Identify issues that may impact care quality and safety
• Recommend changes or services to the CF healthcare team and leadership
• Advocate for patient- and family-centered care throughout Phoenix Children’s
• Plan education and social events for CF families to connect

Recent Accomplishments

The CF Patient/Parent Workgroup has made many strides in helping to improve care and make life easier for families living with CF. Here are just a few examples:

• The Just Breathe CF identifier badge: When patients choose to wear this badge at the hospital or clinic, it alerts staff and other CF families that the wearer has CF. Because of health risks, CF patients should not be in close proximity to each other, so the badge helps others know to keep their distance. The CF Workgroup advocated for expanded usage in clinics outside of the main hospital.
• Long and short “jogger” lists: The grid-like documents help patients and families make the most of each visit with the healthcare team and ensure they get the information they need. They can use the lists to note all the questions or concerns that they want to bring up with the healthcare team at their next appointment.
• Family Education Day: This popular event brings CF families together to learn about research updates, hear from speakers on a variety of CF-related topics and talk with vendors about medical equipment or medication. The CF Workgroup provides suggestions and direction in topics to be discussed, as well as their expertise on patient and family panels.
• Newborn packet: When an infant is diagnosed with CF at Phoenix Children’s, the family is provided a packet of resources that they can use for clinic and hospital visits. The packet comes with a binder so they can keep notes, handouts and information to help them stay on track with the care plan. The work group provided their own stories of when they or their children were diagnosed with CF, in addition to a CF Parent-to-Parent checklist.
• Increased involvement of physical therapy and child life: Workgroup members requested more support from these services in the clinic and collaborated with leadership to make the change. The clinic now has a physical therapist and child life specialist in the clinic.
• Smoothing the transition to adult care: The workgroup strives to continuously improve and smooth patients’ transition from pediatric to adult care, so patients know what to expect and how to advocate for themselves in a clinical setting. The workgroup provided insight on which modules to implement and what areas to focus on within the center’s transition program. Workgroup members have also participated in a transition focus group to provide specific input from their experience within the center’s transition program.

Sean’s story

When Sean Dean was diagnosed with CF, his parents made up their minds to help their son live the best possible life. Today, Sean is a music-loving student at Nashville’s Belmont University and will soon celebrate his 22nd birthday.

The road hasn’t always been easy. His mother, Patricia Dean, gives partial credit to the work she and other CF patients and family members have done, and are still doing, to help kids like Sean get the best care possible and to make life a little easier for their families.

“There are a lot of things about my son’s illness that I can’t control,” she said. “When this was brought up to me, I thought this is something I can do to make a difference. This is a great way for me to get involved and use my voice to improve his experience. His transition to adult care has been very smooth. He knows what he needs and how he should be treated, and he knows how to advocate for himself, and the work we’ve done has a lot to do with that.”

Patricia was one of the first members of what was then the CF Patient and Family Advisory Council in 2009. She has been working with the CF Patient/Parent Workgroup since its launch in 2022.

“Being a workgroup gives us a little more flexibility,” Dean said. “We only have to meet quarterly, although we do meet more often if we need to. It’s a little less structured than a council, and we can shift people in and out depending on what we’re working on.” Patricia is also an active member of the Patient and Family Faculty Advisory Committee.

“I’m busy, but I love it,” she said.

Patricia said her participation on the council and workgroup has given her a chance to work alongside clinicians and see them in a new light.

“You get to work with your medical team on a different level,” she said. “When you meet doctors and nurses in clinic, it’s a real medical environment. But when you get to work with them in a workgroup, you really get to know them as a person, and you get to see how much they really do care for our loved ones. You connect with them on a different level.”

The most important benefit of participation, though, is knowing you’re helping make life better for all CF families at Phoenix Children’s.

“You can use your voice to make changes that are going to improve the inpatient and outpatient experience for your child and yourself,” she said. “That’s huge. You can really see what a difference you’re making.”