By JULIE MINDA
Born a micro-preemie and suffering from gastrointestinal, feeding and other disorders all his life, 5-year-old Sam Tranen is no stranger to hospitals and medical offices.
But, until recently, visits to these facilities usually were a high-anxiety experience for him and his parents. Sam, who is nonverbal and autistic, communicates with hand gestures and through an assistive communication computer. He needs to be eased into new situations. He can become agitated by bright lights and can get frightened and upset in unfamiliar environments.
When Sam Tranen, age 5, got into his room at Mercy Kids Children's Hospital, "Sesame Street" was on the television and there was a pile of toys at the ready to make his experience as a patient less stressful. The preparations were made in line with the "Keys to Me" form his mother had filled out before his visit.
His mom, Dena Tranen, says "because of how he is wired, it can take Sam longer than other kids to adjust or feel safe in a new environment, which makes him more vulnerable to becoming dysregulated." She says she and her husband "were often faced with the decision of whether to allow the staff to physically restrain Sam or to come back later — and that could take months to reschedule."
The experience at Mercy Kids Children's Hospital St. Louis was totally different, says Tranen. The Tranens were the first family in a 2018 pilot for Mercy's "Keys to Me" program, which consults the parents or guardians of children — particularly those with developmental disabilities — on how to make the kids' medical visits as comfortable as possible.
Sam was due for an upper endoscopy, and Mercy asked the Tranens several days prior to the procedure to fill out an online Keys to Me form. In the form, Tranen and her husband described Sam's communication level and behaviors that indicate he is in distress, what rewards motivate him and what accommodations might help him — and them — to have a better experience during the visit. A Mercy Child Life specialist called the Tranens before the appointment to talk in more detail about the information they had supplied.
Before the Tranen family began receiving care at Mercy, son Sam would often try to escape from his medical appointments. That has changed under "Keys to Me."
Tranen says the day of the visit, she and her son arrived to a hospital room with lights dimmed as Sam preferred, with "Sesame Street" on the television as he liked. "He just crawled into bed and sat calmly," unlike in prior appointments, Tranen says. The whole visit went just as smoothly, Tranen says.
That and subsequent appointments were so successful that Tranen has since transferred all of Sam's care from a different hospital system to Mercy. She says Keys to Me "is a game changer — it changes our ability to access care for our son."
Tamping down anxiety
Dr. John Mantovani is medical director of the Mercy Kids Therapy and Autism Center; Katherine Jennings is the center's practice manager; and Tara Anders is a Mercy Child Life specialist. All three helped to create Keys to Me, which Mercy developed beginning in 2017, piloted in 2018 and launched formally last year.
Mantovani says the medical environment and medical procedures can be stressful to any patient, and especially to children, and that may be doubly true for children with developmental and behavioral conditions. He says kids with such impairments often lack the ability to communicate their own needs and preferences.
At a hospital or medical office, children may be thrust into unfamiliar and scary situations where they are expected to submit to medical prodding and procedures they don't understand and that may even hurt. A child's mounting anxiety often triggers their parents' anxiety. Add to that the stress of clinicians who may not have met the child before and do not know the idiosyncrasies or what triggers or soothes their patient, and "you have the perfect storm of escalation of negative interactions," says Mantovani.
Jennings adds that it is common for children with developmental disabilities to have medical comorbidities, and so it is typical for them to be at medical appointments frequently. And, she says, children's memories of stressful past visits can "amp up" their anxiety before they even arrive at an appointment.
Mantovani, Jennings and Anders are part of a multidisciplinary team of about a dozen Mercy St. Louis associates who created and operationalized Keys to Me. The team wrote the questionnaire parents use to describe their child. They input the parental responses into the patients' electronic medical record.
A key icon on a doorframe signals clinicians to consult the patient's medical record for a Keys to Me profile.
Team members conduct in-person trainings and have created "microlearnings," which are brief online education sessions about developmental disabilities in children, for Mercy associates.
The training teaches associates the basics about developmental conditions, potential accommodations that can be made and the Keys to Me approach. Associates throughout Mercy Kids Children's and at Mercy Hospital St. Louis have received the training. Mercy Kids Children's is on the campus of the 859-bed hospital. Mercy is expanding the program next to its pediatric primary and specialty clinics in St. Louis. A gradual expansion throughout the Mercy system will follow with the goal of offering it through all its pediatric primary and specialty care clinics in Arkansas, Kansas, Missouri and Oklahoma as well as at its other dedicated pediatric hospital, which is in Springfield, Missouri.
Toys from Mercy bins distract young patients undergoing treatment at the hospital.
When preparing to treat a child who has a Keys to Me profile, Mercy associates place a magnetic picture of a key on the doorframe of the room where the child will be. Before the patient arrives on campus, staff review the patient's preference and behavior profile so they can anticipate and head off potential issues. For instance, staff may arrange for a child who is anxious in crowds to skip the waiting room. For children admitted to the hospital, staff may turn the TV in the room to a favorite show and bring in toys and games to have at the ready.
Although it was designed for children with developmental disabilities, Mercy clinicians can use Keys to Me to make health care less stress-inducing for neurotypical kids too. Clinicians can fine-tune the instrument, adding their own tips and learnings about individual patients in a clinician section of the Keys to Me segment of the electronic medical record.
Anders says clinicians, parents and kids are far less stressed — and even calm — about medical procedures as a result of the Keys to Me program.
A sample of the types of questions included on the Keys to Me form.
Jennings says the changes happening under Keys to Me are inspiring widespread culture change at Mercy. "We've been very attuned to patient experience for quite some time but through this process, there's been a new dimension added. We're looking at what gives a person a good experience and what about that person makes them have different reactions to the care setting, and how to maximize the insights we learn.
"You can't be certain about what might work unless you ask the people who know the patient well," or in the case of older patients — the patients themselves, she says.
Mantovani says as clinicians learn more about the children they are treating, and have the tools to make their experience better, they are gaining more confidence and more joy in treating patients who formerly may have been considered "difficult."
He says for everyone involved, "These positive experiences tend to build on themselves, and children who may have once been terrified now are more positive, and are more likely to have more positive experiences with medical care here going forward."
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