IBD Patient Parent Work Groups (PPWG)
Patient and Family Advisory Councils & Patient/ Parent Workgroups
IBD Patient Parent Work Groups
When a child has inflammatory bowel disease (IBD), such as ulcerative colitis or Crohn’s disease, the diagnosis doesn’t just affect their physical health. It can impact their emotional, their mental health and their social life. IBD also impacts the entire family – from adjusting eating habits to juggling regular doctor’s visits, treatments, and managing medications.
At Phoenix Children’s, we are dedicated to providing high-quality, evidence-based care. For us, that means meeting you where you are. We regularly seek out input from families just like yours to share your perspective on how we can improve the care we offer to all children.
Consider joining our IBD PPWG.
The Inflammatory Bowel Disease Patient Parent Work Group (IBD PPWG) is a multidisciplinary group of healthcare providers that work alongside patients and families to identify opportunities to advance IBD care at our institution. The work group meets quarterly (and sometimes more often) to fulfill a wide range of responsibilities, such as:
- Respond to specific requests, such as projects, tasks and activities that will help improve IBD care
- Discuss opportunities to improve the overall family experience
- Identify issues that may impact the quality and safety of IBD care
- Provide recommendations to the IBD healthcare team and leadership
- Advocate for patient and family-centered care throughout Phoenix Children’s
- Plan education and social events for IBD families
Since 2017, families have worked hard to improve the quality of IBD care at Phoenix Children’s. Here are just a few of the most recent accomplishments:
- Developed IBD educational handbook for newly diagnosed families
- Organized educational and social events for families
- Raised money to support research and recruitment efforts at Phoenix Children’s
- Developed educational materials to share with the community, including school health offices
- Created a quarterly newsletter to share updates and opportunities with patients and families
- Planned and executed regular educational events for Phoenix Children’s medical staff
- Partnered with the Crohn’s & Colitis Foundation for events and awareness opportunities
Brayden Shindler was diagnosed with ulcerative colitis at 12 years old. The diagnosis came on top of a longstanding eosinophilic gastrointestinal disease diagnosis that already made consuming food difficult for Brayden. As doctors worked to find a treatment that worked for Brayden, his mother Abbie, reflects on her appreciation for the entire IBD team at Phoenix Children’s.
“We were in the hospital for three weeks before we found an infusion treatment that helped relieve his symptoms,” Abbie recalls. “The doctors were amazing. It was very hard to see Brayden in that kind of pain and losing so much weight and blood.”
The family was so grateful that it was only natural to give back to the program.
“We truly believe in the doctors, hospital and the growth we have seen at the Phoenix Children’s since Brayden was born,” shares Abbie. “The kids in the community deserve to have the best doctors available. We are committed to doing whatever we can to attract, recruit and retain those top providers.”
Read the rest of Brayden’s story.