It wasn’t medical knowledge or clinical acumen that ultimately helped Catherine M. White, M.D., FAAP, impact the life of a patient with special needs. It was her team’s commitment to building a relationship with the child’s mother, so they could determine why the family was missing the specialist appointments critical to the child’s care.
“It’s always that elephant in the room … that we didn’t realize there was food insecurity or that someone vital in the child’s life had died,” Dr. White said.
In this instance, a parent partner at the practice discovered the mother had short-term memory problems and couldn’t keep track of her child’s treatment plan. To ensure the child made it to all appointments, the parent partner helped the mom create an appointment calendar and made reminder phone calls.
“Family engagement” is central to Dr. White’s practice at Southwest Montana Community Health Center in Butte. To further improve its relationships with families, the practice participated in the AAP Family Engagement Quality Improvement Project.
From May 2016 through February 2017, eight practice teams, which each included a pediatrician, administrative staff member and parent partner, participated in monthly education calls and tested changes in their practice.
“The project helped us to better ask and be cognizant of what’s going on in the family’s life so we could make things better for them,” Dr. White said. “My nurse, parent partner and I came away knowing we could do this better.”
‘Key to everything’
The project defined family engagement as “a family-centered and strength-based approach to making decisions, setting goals and achieving desired outcomes for children and families.”
“Family engagement is key to everything pediatricians do in their practice,” said Baltimore-based Megan M. Tschudy, M.D., M.P.H., FAAP, the project leader.
Participants increased their understanding of family engagement by 78%, and all of them made clinical improvements. Most teams made practice-level improvements as a result of the project, which was funded by the federal Maternal and Child Health Bureau and conducted by the AAP National Center for Medical Home Implementation.
At Wasatch Pediatrics in Park City, Utah, Kathy Ostler, M.D., FAAP, and her team improved the practice’s care summaries for children with special health care needs. The team also assessed patients’ and families’ understanding of treatment plans by using the teach-back method, which asks them to describe in their own words what they need to know or do.
“In the exam room, I give a lot of information, and not all of it makes it into the family’s understanding,” Dr. Ostler said. “I learned how to take that down a notch and be more organized and specific about what I teach a patient. I’m still using that today, which is the test of a good project.”
Dr. Ostler also formalized a process to ensure she talks about family strengths during visits. Pointing out strengths changes the family’s relationship with the doctor, she said.
“It’s not me with all the information, sharing with them how their kid can get better,” she explained. “The family understands they are the expert on the child when they hear their family strengths presented.”
Along with her parent partner, care coordinator and front office staff, Dr. Ostler used principles of family engagement to reimagine how their waiting room should look — especially through the eyes of a child with special health care needs. The exercise helped the team make the space more engaging while ensuring front office staff can see the front door.
Parents as consultants, team members
“Family engagement is a team sport for a practice,” Dr. Tschudy said. “You have to have champs at every level.”
This includes parents. Practices that fully embrace parent partners often see the biggest rewards in terms of family engagement, she said. During the project, practices that took the most risk in changing their systems based on parent input showed the most benefit.
Both Drs. Ostler and White have worked with parent partners for many years and were able to mentor other practices that were just starting their collaborations. One of those practices was Southeastern Pediatric Associates in Dothan, Ala., where Tiffany Holloway served as parent partner.
Holloway, who also is the office marketing coordinator, provided feedback to help her practice make its parent portal more accessible to families. The practice added a portal link to its website and began providing access codes to parents at checkout. As a result, parents now use the portal to message physicians and nurses, and request prescription refills.
She also said it was great to see how other practices took advantage of parent insights.
Inspired by team discussions during the project, Holloway is planning to implement an advisory panel of eight to 10 parents who will meet quarterly to provide feedback. Soliciting parent feedback is new to many of the doctors Holloway works with, but she believes it will help the practice thrive.
“Coming from a marketing background and understanding culture change, I look at involving parents as such a positive,” Holloway said.
