The S.T.A.R. program exists thanks to the research and vision of Emily’s committee and a well-deserved $100,000 grant from the hospital’s CEO. The Innovation X project grant is awarded to fund a project with the potential to benefit the entire hospital system. The Innovation X funding allowed Emily and her team to implement a pilot version among a few of the hospital's units and their “champions.” Emily and her team educated and trained their interdisciplinary healthcare colleagues, and the pilot program was an overwhelming success. They continue to expand their program and regularly receive accolades from doctors, nurses, administrators, families, and patients. Emily reports that the S.T.A.R. program is so effective that nine out of ten times, the healthcare team is able to complete a procedure without sedation.
The program is centered around a patient intake form that’s completed by parents or other caregivers as soon as the child is admitted to the hospital. Although the form has only nine questions, it has the power to transform a patient’s healthcare experience. Even medical professionals can be nervous around patients with developmental delays because they don’t understand how to communicate with them or how to respond if they become agitated or violent. The deceptively simple intake form is designed to elicit information that will allow the medical team to provide appropriate and individualized care without fear or trauma for anyone involved. This information includes:
- Communication preferences
- Safety concerns/behaviors
- De-escalation advice
- Actions/resources to keep the patient calm
- Medical exams/equipment that might trigger a response
- Preferred pain management and medication type
- Preferred distraction/comfort measures during procedures
A child life specialist, nurse, doctor, or other healthcare professional works with the patient’s family to complete the initial assessment, which is then delivered to the hospital’s electronic charting system. In addition, a hard copy of the intake form is placed on top of the patient's chart. It’s hard to miss because there’s also an actual star on the patient’s door along with a note that reads, “Please see my intake form.” Learning important information about a patient’s communication style, sensitivities, and potential triggers before the first encounter—rather than the hard way—improves the healthcare experience for all involved.
Many of the patients Emily sees have diagnoses such as autism, ADHD, sensory processing disorders, and cerebral palsy. To Emily, it’s self-evident that patients with these types of diagnoses require individualized care and treatment. The saying, “If you’ve met one child with autism, you’ve met one child with autism,” is a truth she experiences daily. One memorable patient is a teen with Down syndrome and special needs, who was hospitalized for renal failure. When he was released from the hospital, his doctor notified the child life team that the patient would need to return to have labs drawn every four weeks—and that he'd had to be sedated to keep an IV in during his inpatient stay.
The mother reported that her son did not tolerate an IV at all. Emily approached the patient as a puzzle and was determined to figure out which part of the procedure triggered the patient's anxiety. Using the mother’s observations and the S.T.A.R. intake form as a starting point, Emily used trial and error to figure out that the boy did not like the tape to touch his skin. Once Emily figured out that tape was the culprit, she suggested using EMLA cream without the Tegaderm on top. The patient was cooperative once he realized there would be “no sticker,” and he sat perfectly still while the EMLA cream took effect.
The patient’s mother had also told Emily that being in a hospital bed was a stressor for her son. Given this information, Emily added a recliner to the sedation room. The patient returns regularly for his labs, which is now a relatively routine and stress-free experience. Sticking to an expected schedule is key, and the patient visits the same room and follows the same protocol each time. He knows to sit in the recliner, put his hand on a pillow, place the EMLA cream, take his liquid medication, and do "big deep breaths" with the mask. There is some medication involved, but it’s not as much as he received while inpatient. The patient receives oral medication (his preferred method) and laughing gas, and the healthcare team has been able to reduce the doses on each subsequent visit.
This S.T.A.R. success story underscores the level of individualization that’s required to provide appropriate care for patients with developmental delays. All children have unique fears and concerns, and this is especially true for Emily’s patients. There are many potential triggers, and they are as varied and unpredictable as the color red, being touched on the right side, or the sound of water. A one-size-fits-all approach is not possible. Thoughtful investigation, trial and error, creativity, and patience are needed to discover a patient’s preferences and needs.
Emily asks real-life questions to discover information relevant to the healthcare experience. For example, “How does your son handle trips to the grocery store?” or “How does your daughter react to fireworks?” are questions that can determine if the child isn’t comfortable with large groups of people, loud noises, or bright lights. If large groups are the issue, hospital staff can reduce the number of people in the room. If the patient is sensitive to light, staff can dim lights and offer sunglasses. For patients with auditory sensitivities, hospital staff offer noise cancelling headphones. Those with other sound preferences are offered a boom box and sound machine.
The answers to “red flag” questions often lead to creative solutions and innovation. Emily had a patient who was clearly agitated and upset. He jumped/lunged at anyone walking into the room, screamed, and was not calm enough for a scheduled medical procedure. Emily asked the mother about the boy’s bedtime routine and learned that he likes to sleep under his mattress. The hospital’s weighted blanket wouldn’t work because the child also wanted to move around. Emily found an X-ray vest so the patient could have the comfort of both weight and movement. Eventually, he calmed down enough to sit on the floor and play with a toy. Once he was calm, he was able to handle the procedures. The X-ray vest is now on rotation for children who need to move to keep themselves calm and are also sensory seeking.
The benefits of the S.T.A.R. program are numerous. In addition to alerting healthcare providers about issues that might affect the delivery of healthcare, the S.T.A.R. form allows the child life team to transform a patient’s room into their own, individualized sensory room. First impressions are important, and providing the right lighting, limiting the number of people in the room, or providing noise-cancelling headphones can be the difference between a welcoming, comforting environment and a traumatic introduction to the hospital setting.
The S.T.A.R. program has contributed to a decrease in
- the rate of psych sitters
- the rate and length of stay for patients
- the risk of harm to patients and staff
- the use of sedation for procedures
and an increase in
- patient coping
- patient and family satisfaction
The S.T.A.R. program has improved the healthcare experience for numerous patients and families and has the potential to revolutionize healthcare for special-needs patients of all ages.