• Article
  • February 1, 2019

Educating Providers on Delivering the Best Care to Children with Complex Medical Conditions

This educational program exposes community providers and medical students to a variety of clinical and non-clinical situations they could encounter while providing care to children with complex medical conditions. 

By Michael D. Kelleher, M.D., Deborah A. Grisko, RN, and Mary P. Campbell

The growth in the number of children with complex medical conditions poses challenges not only to children's hospitals but also to the entire health care system. Providers must be prepared to serve children with complex medical conditions effectively and efficiently through the continuum of care.

Shift to Value-Based Care

Medical students participate in rounds to learn how to better care for children with complex medical conditions.

As hospitals begin to transition away from fee-for-service and toward value-based care, CHA’s pediatric-specific resources can help.

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But there are limited opportunities to train medical students and residents to care for children with complex medical needs outside the acute care setting. In fact, most physicians can complete seven to 10 years of medical training without any exposure to these patients in outpatient settings. Consequently, physicians typically only see these children while they are undergoing the most intensive care.

Today's medical education gap when it comes to caring for children with complex medical conditions is not the result of the learner's choice, but a medical education system constrained by regulatory requirements and established curricula that make it a challenge to add new content. There is also a problem of access—with no training sites beyond the acute care setting in most health networks, students do not have a place to acquire skills for outpatient application.

Here's how Almost Home Kids (AHK), an affiliate of Ann & Robert H. Lurie Children's Hospital of Chicago, set out to fill the educational void. AHK addressed this issue by creating a medical education program targeted to medical students, residents and fellows and community physicians. The program offers providers a learning channel that supports better care for children with complex medical conditions and the health care field's value-based initiatives.

Creating a medical education program

Medical students participate in rounds to learn how to better care for children with complex medical conditions.
Medical students participate in rounds to learn how to better care for children with complex medical conditions.

Almost Home Kids launched its Keith Veselik Medical Education Program in 2015 with two objectives: provide 24-hour medical and nursing support to children with complex medical conditions at community-based facilities; and expose providers to a variety of clinical and non-clinical situations they could encounter while providing care to children with complex health needs in a transitional and respite care center. In its first few years, the educational program focused on medical students, residents and fellows.

The flexible format allows participants to choose from three levels of experiential learning: one to four days onsite, two weeks onsite, or four weeks onsite. There is also a lecture-only option. Reading, writing, and presentation assignments augment onsite experiential learning.

Peter J. Smith, M.D., M.A., AHK medical director and faculty advisor, meets with each participant to tailor the experience based on his or her goals and schedule. Students at all levels can expect to come away with an understanding of daily care routines, the logistics of transporting patients, and coordination and collaboration in care.

"Seeing it is different from simply hearing about it," says Smith about the curriculum. The components of training include interdisciplinary rounding, observing the full range of nursing care, and reviewing the details of case management—all with the aim of raising the participants' awareness of the systems of care. This experience reinforces participants' appreciation for the range of entities with which families of children with medical complexity must interface.

A more intensive, two-week rotation features extended nursing care and case management shadowing. Learners are hands-on members of the care team. Under supervision, they perform the full gamut of tasks including tracheostomy care, g-tube care, medication administration, suctioning, ventilator management and more.

More than patient care

The second half of training helps participants learn how to train family members in the care of their child. All phases of the experiential learning plan are nurse driven. "Our highly skilled RNs provide individualized patient teaching to parents and caregivers in preparation for when they transition their child home," says Amy Galetti, AHK's director of nursing.

"The training enables parents and caregivers to feel confident and competent to fully assume the child's care. This same process is employed with students to give them a complete picture of what families face when caring for a child with medical complexities."

Participants who take the four-week rotation represent those preparing to be future leaders in the field. They receive additional caregiver competency training and firsthand experience with patient transportation. Smith, along with Ann Karch, M.D., one of the medical directors of the Naperville facility, regularly fine tune the curriculum based on participant feedback and advances in the field.

Getting feedback

From July 1, 2015 through March 31, 2018, 500 providers have participated in the Almost Home Kids educational program. Participants take a pre- and post-experience survey. The survey captures their exposure to and attitudes toward children with complex medical needs, and it measures any differences before and after their session.

Results show an improvement in participants' awareness about the challenges these patients and their families face. According to Smith, "It's the ‘ah-ha' moment. It wasn't on their radar before, but now they are conscious of it."

One Loyola University medical student said, "It has been valuable for me to gain a more nuanced understanding of the day-to-day workflow for nurses and ways they interact with physicians, patients and families. In particular, seeing the level of nursing care required for CMC has shed new light for me on the challenges inevitably faced by parents when they take their children home."

Lessons learned

Start-up and management of an educational program are time-intensive and require additional administrative staffing outside of AHK's operating budget. The educational program would not be possible without the support of a local private foundation. Foundation funds underwrite an administrative position to manage paperwork, outreach, logistics and scheduling and programmatic tasks.

Strong relationships across many institutions and the flexibility of the curriculum contributed to the program's popularity. The program reached capacity at 116 learners in the first year, and with this success came challenges. First, program staff had to streamline the administrative onboarding of participants once they arrived at AHK.

Scheduling—internal and external—posed the biggest challenge. To ensure an optimal educational experience, participant site visits had to be matched with the availability of onsite educators. The solution was to limit the number of learners on any given day. Also, to accommodate requests for learning slots, program staff members have taken a proactive communication approach by asking institutions to gage future participant interest.

What's next?

Children with complex medical conditions tend to see more specialists than the rest of the population, so plans include expanding the educational program to other resident and fellowship specialties, such as surgery, in addition to pediatrics. To reach more medical students, AHK plans to enter into agreements with participating medical schools for mandatory rotations. Extending the length of the elective rotations is also on the docket.

Episodic care and fee-for-service reimbursement models will soon become obsolete in the face of forthcoming value-based mandates. Transitional care facilities like AHK and its educational program align with quality outcomes in which interdisciplinary teamwork plays an essential role.

Michael D. Kelleher, M.D., is chief medical officer, Crown Family Professor of Pediatrics and associate professor, Department of Pediatrics at Ann & Robert H. Lurie Children's Hospital of Chicago; Deborah A. Grisko, RN, is president and executive director, Almost Home Kids; and Mary P. Campbell, M.A., is writer and editor based in Chicago.

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