Every time a child receives a surgical Gastrostomy Tube (GT), families and caregivers face a huge level of responsibility and added stress.
Children with GTs face a high risk of re-infection and returning to the hospital. Up to 15 percent of these children end up at the ED within 90 days of insertion, and 83 percent of these visits are potentially avoidable.
Caregivers of children with GTs are more likely to experience depressed moods, feelings of guilt, worry, sorrow and anger, according to research on parents of children with complex medical conditions conducted by Nathaniel Bayer, M.D., pediatric hospitalist at GCH.
“In these cases, we need to make sure we’re taking care of the parents as well as the children,” said Bayer. “It is our job as healthcare providers to recognize their needs and connect them to services.”
To that end, the Quality Improvement (QI) team has recently engaged in a new project to improve GT outcomes, particularly for families in lower socio-economic conditions that are at greater risk. Initially started by former medical student Mariah Erlick in 2021, the GIRAFFES (G-tubes: Improving Relationships and Abilities through Family Feeding Experiences and Support) program provides peer mentorship, improved supplies, and clear messaging around G-tube safety and support.
“We looked at making the GT experience more user-friendly and asked the question: ‘What’s holding families back and making the experience difficult for them?’” said Erlick.
The GIRAFFES program was based in part on previous QI projects focused on communications with families facing greater socio-economic barriers across all GCH inpatient units. One previous initiative encouraged families to practice safe-sleep habits with their newborn children. A multi-disciplinary team worked to promote best-practice sleeping habits while building a welcoming environment, creating a toolkit that can be shared with families, offering more Spanish translational services, and transitioning to a more conversational approach in order to prevent conflict.
“We worked with social work and psychologists to provide more motivational interviewing strategies and met families where they were at, asking whether they were open to discussing safe sleep and making sure to acknowledge their perspective,” said Jan Schriefer, M.B.A., M.S.N., Dr.P.H., director of QI at GCH.
Since launched, the GIRAFFES program has grown to be a vital component for the Pediatric Advanced Nutrition Support (PANS) program’s population of more than a 1,000 patients. After Erlick’s initial stewardship, GIRAFFES has also grown by connecting to other peer mentorship initiatives at GCH, called Buddy Programs.
“By meeting monthly with the GIRAFFES staff and the staff of both the trach and NICU Buddy Programs, we’re able to develop universal checks and balances in this peer mentorship work, share best practices and problem solve together to create the best programs possible for our patients and families,” said Jennifer Johnson, director of family and community outreach. “Additionally, it’s not uncommon for a patient to need the NICU, a GT and a trach so it makes sense that we work together.”
Informal community support drives the success of the program. GIRAFFES solicits Feedback about the challenges families are facing in maintaining GTs, then uses this information to tailor training materials and face-to-face instruction
Another critical aspect of GIRAFFES is its specialized focus on a small cohort of patients with GTs who comprise the majority of emergency department utilization. These patients have risk factors that include systemic marginalization and exclusion based on non-white race, public health insurance, and lower level of caregiver education.
Patients who fall under these risk-factors are monitored by Area Deprivation Index, a metric based on a census-level evaluation of socioeconomic status data of a small geographic area around a caregiver’s address, which has been correlated with likelihood of ED presentation.
“If we use those metrics, we can then proactively offer support and care for those families to prevent those problems,” said Schriefer
Previous, less specialized QI efforts had lowered ED visits for these patients during the past four years. Thanks to initial funding from two grants from the URMC Quality Institute and the Vermont Oxford Network Health Equity Innovation Grant, the GIRAFFES GT project hopes to make even more progress on reducing ED visits in the next few years.