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Family Focus

Published on August 30th, 2021 by Christina Echegaray.

Monroe Carell Jr. Children’s Hospital at Vanderbilt recognized the power of these caregivers in 1995, when the Family Advisory Council (FAC) was established. Previously, hospitals were operating under an institutional-centered approach, which did not allow for much input from patients and families about their own care. At the recommendation of child psychologists, over time hospitals began implementing a more patient- and family-centered approach to care.

The most prominent example of this approach at Children’s Hospital is the FAC, which is still active today. The FAC includes parents and hospital staff who identify concerns and priorities, offer input in planning programs and policies and create education and support resources for medical providers.

For Brittany Swanson, chair of the FAC at Children’s Hospital, the necessity of family-centered care was voiced by her son, Coben, who was diagnosed with T-cell acute lymphoblastic lymphoma when he was 7, while the Swanson family was living in California. After two years of continuous inpatient care, the Swanson family decided to research oncology teams in other states.

“Children’s Hospital at Vanderbilt won hands down,” Swanson said. When the family got to Nashville in 2016, Coben, who has autism, was overwhelmed with changes. Coben, now 13, asked his mother to find a way to voice his difficulties. From there, Swanson knew she had to seek out the Children’s FAC. She has served since 2017, becoming the chair in January.

Brittany Swanson, shown with son, Coben, joined the Family Advisory Council to be an advocate and voice for families like hers who navigate health care for their children. Photo by Donn Jones.

Swanson first realized the FAC’s impact on patient care early in her family’s time at Children’s Hospital. At Coben’s previous hospital, Swanson was responsible for keeping track of her son’s medications, dosages, MRI and CT scan results, dates to change his nasojejunal feeding tube and anything else related to his care.

One week before Coben was due for his first chemo infusion at Children’s Hospital, Swanson received a call from his care team. She was pleasantly surprised that someone else was coordinating Coben’s care. His care team coordinated and arranged his specialty doctors’ visits, allowing him to see them all in a single day. They also appealed to the pharmaceutical company on the Swanson family’s behalf for Coben’s medications that insurance did not cover.

“At the time, I wasn’t aware of the Vanderbilt Patient and Family Promise, but as I began to work with the FAC, it became clear that it was not only a great idea, but that it was actively being put into practice every day. ‘Coordinating care’ is a huge help to parents like me, and I do not take it for granted. After having experienced it firsthand, we are aiming as a family council to ensure all families feel that their care is coordinated, taking a weight off their shoulders like it did for my family.”

 

Who is the FAC?

To join the FAC, parents must have a child actively receiving care at Children’s Hospital. Usually, the child has a chronic illness or condition, which calls for parents to be at the hospital frequently for their child’s treatment. The goal is to put the most deeply involved parents at the forefront of the council’s decisions. Other requirements are attendance at 75% of the council’s meetings and a willingness to provide constructive feedback to hospital staff and leadership. To protect parents’ emotional well-being, the FAC recommends they wait until the initial crisis of their child’s diagnosis has passed before joining. The FAC currently has 25 members.

“To be able to put the family and patient at the center of care, you have to understand who they are,” said Janet Cross, MEd, administrative director of Patient- and Family-Centered Care at Children’s Hospital. “We want to get to know them and understand their beliefs and culture, what’s important to them, what their resources are and what their strengths are. Their perspective has to be at the table.”

Swanson is a great example of the seasoned perspective the FAC looks for. She has spent countless days in hospitals and as a result, is able to accurately represent the family experience. As chair of the council, Swanson’s goal is to continue utilizing real families to learn what is working well and identify opportunities for improvement. She does not shy away from sharing her open and honest opinions with hospital leadership and encourages other families to do the same. “If we don’t know something’s broken, we can’t fix it,” says Cross, in agreement with Swanson’s approach.

The parents who make up the FAC are so valuable to Children’s Hospital that a rule has been implemented to allow parents whose children age out of pediatric care to stay on the council for three more years. Parents are now able to offer their valuable perspectives on the sometimes challenging transition to adult care.

When these three extra years end, patients have the opportunity to transition to the Vanderbilt University Adult Hospital family council. The FAC is one of three family councils at Vanderbilt University Medical Center. Vanderbilt University Adult Hospital and Vanderbilt Behavioral Health also have one. Hospital leaders across all three areas and their respective family councils collaborate and share strategies for success, as well as ideas for problem-solving.

 

The FAC Experience

Parents join the FAC as volunteers, undergoing background checks and orientation like VUMC employees. From there, they attend monthly meetings with FAC members and hospital staff, sharing their perspectives about patient- and family-centered care. “I see it as a place where my opinion matters, where I get to be an adult and reimmerse myself with the kind of work life I had prior to becoming a full-time caretaker of a child with critical health needs,” Swanson said.

When the tasks at hand feel laborious, Swanson chooses to focus on the greater purpose of the FAC. “I remember why I wanted to be part of the council in the first place — to speak on behalf of the families who may not have a voice, or don’t know what to ask for when it comes to the care of their child. We want to bridge the gap between medical providers and parents unable to speak up for the best care.”

Before the COVID-19 pandemic, all FAC meetings were held in person. Now meetings are held via Zoom, but Cross does not see this as a hindrance. “Zoom meetings have given us the ability for more participation. Our members who live nearby are able to conveniently join us without needing a babysitter, and we’ve been able to add families from farther away who normally wouldn’t be able to commit to monthly trips to the hospital.” Virtual meetings also allow Children’s Hospital administrative team leaders, who are present at every council meeting, to join more easily. In the future, the FAC plans on implementing hybrid meetings, so every member can still easily share their valuable input.

 

Advising and Improving the Hospital

The FAC advises Children’s Hospital on big decisions, such as building redesigns and restructuring, as well as smaller decisions, such as minor, but necessary, changes to the Children’s website. Many parents serve on the Quality Committee, which evaluates mistakes and near mistakes made by the hospital.

“Our Quality Committee looks at areas where we could improve,” said Cross. “Some hospital staff were nervous about airing mistakes to families, but the reality is our families are so passionate and committed to making care better that they understand we’re human. The Quality Committee never judges mistakes. Instead, they offer constructive feedback to help us improve things in the long run.”

The Quality Committee recently took action when a child of a member of the council received an incorrect after-visit summary. The council member was able to share this experience with the Medication Safety Committee. Hospital staff analyzed the mistake and put actions into place to prevent it from happening again. “This is just one example of our council members bringing issues to our attention before they affect other patients,” said Cross.

The FAC is involved in many steps of the hospital’s operations, including training new Children’s Hospital employees. Every new Children’s Hospital employee has an orientation session with parents from the FAC, where the parents offer a true patient perspective and guidance. In 2020, the FAC provided orientation to 4,662 new hires at Children’s Hospital.

“The most impactful work we do as members is attending new employee orientation, where we are invited to share our child’s story in a very personal way,” Swanson says. “We instill in each employee just how important their job is. It takes a special kind of person to work at a children’s hospital, and I think we’re able to give them some insight to the reality of those little faces they see each day.”

In addition to new employee orientation, the FAC has also worked with the Emergency Department to evaluate teen suicide prevention strategies, met multiple times with the Children’s Hospital dietary team to evaluate in-hospital food for children, worked with anesthesiologists to standardize NPO (nothing by mouth) guidelines across the hospital and offered advice for various communications scenarios, such as the best way to send a message about a child’s procedure being rescheduled. The FAC even helps Children’s Hospital decide the best furniture and room layouts for newly opened hospital floors.

Swanson is most proud of the FAC’s efforts in designing an upcoming award, the Patient and Family Choice Award, that honors any staff member at Children’s Hospital who positively impacts care. “The award could go to the valet staff who cheer you up each time you visit or to the hardworking mom who comes in late at night to clean your child’s room. We want to better recognize all of these essential people and their roles.”

 

Shared Experiences and Support

By listening to patients’ needs, incorporating their ideas, partnering in their safety and educating them to advocate for their own care, the Children’s FAC is at the forefront of patient- and family-centered care at Children’s Hospital. It offers an opportunity for parents to give back and create action and change. It’s a healing experience for those involved.

“We’re only snapshots in a family’s life, and our goal is to figure out how to help them be successful,” said Cross. “What better experts than patients and families to help us understand their perspectives?”