TORRINGTON, Conn. — Walking through the health simulation center at the Yale School of Nursing feels like taking a tour of the cleanest, quietest hospital pediatric unit and maternity ward ever to exist. That is, until the professors start using the manikins lying in the hospital beds.
Professors transform the life-size, rubbery, mostly expressionless manikins — modeled after adults or children — by adding fake blood and fluids to simulate injuries. Students then receive a short list of symptoms and must determine the diagnosis and treatment.
Manikin models were regularly upgraded throughout the years, becoming more advanced and inclusive in sizes, ages and races. However, that’s where most of the diversity in models has historically ended.
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Until Gwen, a hyper-realistic manikin created from a 3-D scan of a 7-year-old girl with Down syndrome and a new member to Yale’s collection. Not only is Gwen an educational tool, but she is also the heart of a new master’s level concentration focused on caring for people with intellectual and developmental disabilities across their life.
“We don’t just want to weave it in,” said Christine Rodriguez, Yale’s associate dean of nursing impact and a driving force in bringing Gwen to the school. “No, we want it to be separate and a standalone in itself, because it’s so important.”
Intellectual and developmental disabilities, or IDD, are a broad term covering a wide range of conditions, including genetic, neurodevelopmental, metabolic, endocrine and neurologic disorders, as well as developmental delays, Rodriguez said. These can range from Down syndrome and Angelman syndrome to autism and learning disabilities, sometimes overlapping.
“Folks with IDD have a constellation of health problems,” Rodriguez said. “It’s complicated by access issues.”
Patients with IDD often rely on multiple providers within their care team. Rodriguez, who uses she and they pronouns, noted a tendency to establish dedicated “one-stop shop” medical centers for people with IDD, which can provide comprehensive care to the whole person, separate from the larger community.
As a result, gaps remain in medical education on caring for the IDD community. They noted that existing training is often too general, reducing people’s experiences to a siloed, medicalized view that can be condensed into a few slides in a lecture.
“This is a big issue, because if you don’t have the proper training, then how are you going to address the complex and varied needs of people who have developmental disabilities?” said Rodriguez, adding that people with IDD face higher mortality rates.
Manikin for medicine
The purpose of using silicone life-size manikins and body parts in simulations is to re-create clinical settings in a relatively low-stakes environment, preparing the next generation of providers for real-life care, said Linda Ghampson, a nurse of 20 years and director of simulation at the nursing school.
A popular tool in medical schools for practicing clinical skills, manikin models vary in ages, races, weight and capabilities, Ghampson said. More expensive, high-tech models, for example, make loud heart noises and speak with a voicebox the staff can control.
They also all come with their own unique model name — from a 200-pound buff man named Stan to Victoria, the pregnant mother who can deliver a baby in real time. There’s even Super Hal, an AI-powered machine that staff can upload personalities, languages and specific medical scenarios with the students. Super Hal can answer questions on how he’s feeling and will shake your hand. He can also pee himself.
Students interact with the manikins by checking their vitals, making a diagnosis based on the symptoms, and offering treatment, such as inserting an IV, administering fluids or doing an intubation. Professors survey the students’ interaction and offer advice on what can be improved.
“It does really bring in all the parts to the experience without actually having an effect on a real patient,” Ghampson said. “If they make mistakes … that is a learning moment and then you teach them what to do.”
The main differences between the manikins are in diversity across race. However, Ghampson said there has never been a manikin demonstrating how a chronic condition affects the administration of care.
That’s where Gwen can come in, Ghampson said, since she was created based on a 3-D scan of a 7-year-old girl with Down syndrome. Lifecast Body Simulation, the company that made her, says Gwen is the world’s first training manikin with Down syndrome.
When it comes to technology, Ghampson said Gwen is simple for a manikin, letting her hyper-realness shine. Her home is the “pediatric wing” of the simulation center. She lies in her hospital bed, tucked in, with her almond-shaped eyes forever locked on the ceiling.
Gwen’s skin is pale enough to see the faint tinge of blue marking her veins running up and down her arms and legs. Ghampson said Gwen is supposed to look as real as possible, unlike the other manikins that are more doll-like.
Ghampson lifted Gwen’s arms and noted the single crease across her palm — a common trait in people with Down syndrome — then dropped it back onto the bed with a heavy thud. She then reached for Gwen’s feet, bending them back to show the gap between her toes.
To enhance the student’s experience, the staff adds speakers or a Bluetooth-controlled voicebox to make Gwen more interactive, Ghampson said.
The purpose of creating a hyper-realistic manikin such as Gwen is to train students to recognize, diagnose, and provide appropriate care, while understanding how an IDD such as Down syndrome can shape the way that care is delivered.
Helping students answer questions such as, “if you’re presenting with Down syndrome, what are some of the things I’m going to do to take care of this person? What do I need to know?” Ghampson said. “Do I need to involve the family in the care? Or do I just talk directly to the patient? Sometimes the speech may not be appropriate, but what are you doing about that?”
Teaching equity
Gwen is also the inspiration for a new initiative focused on filling the education gaps in the IDD community. The new master’s level concentration in IDD would feature two courses dedicated entirely to the subject.
Rodriguez is spearheading the development of the curricula that will eventually include evidence-informed practices, lectures from global experts in the field, conversations with people living with IDD, an annual symposium and, of course, Gwen. They added that they are working on convening an advisory board of medical experts, self-advocates and community partners to help develop and manage the program, too.
They envision a specialty that trains students in a more patient-centered approach — teaching them to support individuals with IDD and their families from the first diagnosis through to independent adulthood. This could involve guiding parents through the care system after an early diagnosis, linking families to counseling, or supporting individuals in community integration through employment and housing, Rodriguez said.
“This is something that really is going to encompass from birth to the end of life,” they said.
The initiative will also look to establish clinical and community partnerships with local organizations and medical experts who specialize in caring for people with IDD. Rodriguez said they have already received calls from the local Special Olympics and Connecticut Children’s Medical Center, excited by the idea and looking to team up.
The entire initiative is funded by a $7.7 million donation from a pair of Yale alums and longtime supporters of IDD educational initiatives, according to Yale News.
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