• Article
  • July 2, 2019

Improving Care for Children with Special Needs in a Health Care Environment

Program that individualizes care and promotes a safe place for healing and wellness.

Caring for children with special needs

After implementing the BEE Mindful program at Cohen Children's Medical Center:

  • Length of stay decreased by an average of two days
  • The hospital's "staff addressing personal needs" Press Ganey score increased by 4.3%

By Jennifer Simonetti, M.S.N., CPN; Sharon Goodman, M.A., RN-BC, CPNP

At Cohen Children's Medical Center in New Hyde Park, New York, a 12-year-old girl reported to be autistic and non-verbal was admitted for potential new onset seizures. Once she got to the medical/surgical unit, she began to have behavioral outbursts that made it difficult for the team to perform tests necessary for her medical work-up.

The patient was combative, hitting, scratching and biting herself and staff members. Due to her behavioral outbursts, tests were unavoidably delayed for days. The staff became increasingly frustrated and described the patient as being in a fight or flight response whenever she was approached. Frustration levels continued to escalate.

Using the Team STEPPS methodology, a leadership team called a huddle to discuss this patient's plan of care. Jane McMahon, B.S.N., RN, CPN, medical surgical clinical nurse, expressed concern they were missing something because this patient attended school—there must be a way she communicates.

The team discovered the girl communicates through a school-provided electronic device, but out of concern it would be lost or broken in the hospital, the parents opted to not bring the device with them. The team contacted the patient's school and signed out the device, so they could use it in hospital.

A magical moment occurred when the patient had the device in her hands. She began communicating with the team and didn't appear combative or scared. There was no longer a need for constant observation or confinement to her room. She could go to the playroom, have tests performed, treatments implemented, and providers discharged her shortly thereafter.

This one patient had such a significant effect on staff that it led to the development and utilization of the BEE Mindful program at the hospital. 

Here's how the BEE Mindful Program at Cohen Children's Medical Center identifies a lack of tools and resources for patients and staff specific to caring for children with special needs. The team's mantra from the beginning of the project was if they could help one person and prevent what happened to this one patient, the program would be a success. 

Numbers show the need

Children's hospitals are increasingly caring for patients with special needs, and many of these children have multiple conditions requiring hospitalization. Statistically, one in six children in the U.S. have special needs, with the largest expansion in behavioral diagnoses.

And the prevalence of autism in the U.S. has increased by more than 119 percent since 2000 with most recent data from the Centers for Disease Control showing a rate of one in every 59 births. Attention deficit disorder diagnoses have also increased to 6.1 million children, representing about 9 percent of the population.

Make healing possible

Medical environments are a challenge for patients with special needs. In addition to their medical conditions, many of these patients also have neurobehavioral diagnoses including autism spectrum disorder, attention deficit disorder and sensory integration disorder.

Medical environments are often the antithesis for the promotion of healing and wellness with this vulnerable population. If not appropriately addressed, their needs may lead to delays in procedures, tests, treatments, increase in safety risks, restraint use, and ultimately an increase in the child's length of stay in the hospital. A traditional health care approach for these children can result in aversions to future medical care prompting families to avoid or wait to seek medical treatment due to poor experiences.

At Cohen Children's a survey revealed:

  • 96% of staff felt the hospital could improve care provided to children with special needs
  • 58% of staff felt comfortable caring for children with special needs
  • 98% of staff felt children with special needs would benefit from individualized care

Changing it up 

The Cohen Children's team developed the BEE Mindful program to address these issues in line with a complex care environment. The three key components are:

  • Education for all hospital staff
  • A visible symbol to identify special needs patients
  • The Pediatric Neurobehavioral Assessment Tool (PNAT), an assessment and intervention tool to help provide the individual care these children deserve and need

Staff at Cohen Children's Medical Center learned about BEE Mindful through an interactive e-learning module with emphasis on visual and auditory depictions of how a child with special needs hears and sees the world.

Pause for awareness

The BEE Mindful symbol was purposefully made so it's non-identifiable by the public. The intent of the symbol is not to stigmatize the patient but rather support the needs of the child and family. The symbol is placed outside the patient's room and on the chart. It provides a visual pause that creates situational awareness and redirects staff back to the medical record to review the PNAT or speak to the primary care nurse for instructions on how to be best proceed.

With the use of the symbol, Cohen Children's Medical Center minimizes the amount of interruptions to the patient's room through clustering of care. The hospital teaches patients and families their bed or room is a safe place and no harmful procedures will be conducted in that space.

Pediatric Neurobehavioral Assessment Tool (PNAT) 

There is no algorithm or formula for how to care best for a child with special needs, and the team recognized the importance of recognizing the needs of each patient. An interdisciplinary focus group consisting of 25 medical employees and family input created the PNAT, which is completed for all patients.

Putting components together

After implementation, length of stay (LOS) decreased by an average of two days bringing the once higher than average LOS for children with special needs below average. This decrease in LOS may be a result of performing tests and treatments in a timely manner without delay due to effective patient management through the BEE Mindful program. 

The hospital saw an increase in Press Ganey patient experience scores related to the question "Staff addressing Personal Needs" by 4.3%. Families also expressed thankfulness and relief as they experienced the positive impact of the BEE Mindful program for their child. McMahon says the program has made a world of difference for everyone involved, not only for the patients and families, but for the staff as well.

Jennifer Simonetti, M.S.N., RN, CPN, and Sharon Goodman, M.A., RN-BC, CPNP, are assistant directors of nursing at Cohen Children's Medical Center in New Hyde Park, New York. Send questions or comments.