In a clinical setting, children may be surrounded by unfamiliar situations they don’t understand. Some of these children have developmental needs that affect their ability to communicate, and a child’s mounting anxiety can often trigger their parents’ anxiety.
Stress is added when clinicians don’t have information about what triggers or soothes the patient. These encounters can result in compromised care and unsuccessful procedures.
Mercy Kids in St. Louis created a program, Keys to Me, to minimize anxiety and potential emotional trauma from medical procedures in children with developmental and behavioral health needs. By anticipating a child’s needs before the visit, providers proactively adapt the care setting and make the medical environment comfortable and engaging.
Keys to Me bridges the gap between parents and providers by encouraging early parent communication, a portal to update information directly into a child’s medical record and provider education.
Developed by a team of child life specialists, board-certified behavior analysts, child neurologists, nurses, administrators, health record specialists, and clinical social workers, a program was initiated with a goal to increase successful completion of pediatric medical procedures. Patients were identified as affected by neurodevelopmental disorders, such as autism, and known to have had a negative experience or failed procedure in the past.
To pilot the program, a sample of 10 children, parents and caregivers, were interviewed during an admission phone call about what might help the child feel relaxed during the appointment. Using a script, providers reviewed a set of 10 prompts with parents, including:
- What are the keys to understanding how your child communicates?
- What calms your child?
- What might make your child more comfortable in the environment?
- What helps you, the caregiver?
During these conversations, parents and caregivers shared the intricacies of how their child interacts with providers. The information was used to adapt the clinical space with accommodations such as dimmed lights, a favorite toy or video, a limited number of providers entering the space, visual supports, and a preferred reward once the child was finished.
With this information available to providers prior to a procedure, parents say they felt heard and included in their child’s care. According to one parent, “There was deep compassion, an eagerness to listen and a great desire to do everything in their control to make my son’s day easy.”
Sharing the knowledge
In 2019, 37 staff members across 16 departments attended a two-and-a-half-day training to be certified as Key Trainers. With this education, these staff members are leaders in the implementation of Keys to Me across clinical settings. With a growing need for access to the education, the Keys to Me team rolled out a 10-part micro-learning series that has been completed by an additional 370 colleagues in the adult and pediatric settings at five of the Mercy system hospitals.
During training, the Keys to Me team realized a need to have this information integrated into the child’s health record. The original parent interview form was embedded into the electronic health record to make it easily accessible and easily updated as behaviors and needs change. Each participant is identified with a green banner at the top of their chart with a live link to the information.
Sensory friendly vaccine clinic
Most recently, Keys to Me expanded its reach to increase access to families seeking COVID-19 vaccines for their children. While the rate of COVID-19 infection in children remains comparatively low to that of adults, children and youth with special health care needs may be at increased risk for more severe illness and complications after infection, according to AAP’s healthychildren.org. This includes children with chronic physical, developmental, behavior or emotional conditions, disabilities and those with medically complex conditions.
In partnership with Mercy’s COVID Vaccine Clinic, Mercy Kids offered a sensory friendly vaccine clinic. Patients and families could tour the vaccination space prior to the event, and providers were equipped with information about accommodations for each participant.
The environment was controlled and closed to the public. Lights were dimmed, private rooms were provided, and providers were supported with hands-on training to meet individual developmental needs. Several participants who had previously failed attempts to get the vaccine were administered their shots with the help of these individual accommodations.
A new best practice
A growing number of programs in pediatric health care are focused on promoting successful outcomes of medical procedures for children with developmental and behavioral needs by implementing environmental modifications. These programs allow for a greater value of measurement and ultimately, a new standard of care.
Keys to Me continues to individualize health care to support children. In the four years since implementation, more than 800 patients have enrolled with a goal to expand programming to additional children’s hospitals and health care programs.
