Caring for Medically Complex Children Takes a Village

By | 2022-05-09T09:53:36-04:00 May 9th, 2022|0 Comments

Content courtesy of UPMC.

Nurses have integral roles in emerging healthcare models aimed at meeting the needs of a growing population of medically complex children.

In a 2011 paper published in Pediatrics, authors pointed to increased survival rates of infants born prematurely, those with various congenital anomalies or chronic conditions, as well as children who today are more likely to survive cancer and other illnesses.

And while children with medical complexity represent only a small percentage of the pediatric population overall, they account for the lion’s share of pediatric healthcare spending.

“As many as 3 million children throughout the country have complex medical conditions like cerebral palsy, cystic fibrosis, congenital heart disease, or cancer resulting in frequent ED visits and subsequent hospitalizations. These children account for one-third of total healthcare spending and 40% of Medicaid’s total spending on kids,” according to a Children’s Hospital Association news release.

Children with medical complexity have chronic multisystem health conditions, according to Stephanie Whitfield, MSN, RN, CPN, Subject Matter Expert Writer for Relias, who worked at Duke Children’s Complex Care Service, at Duke University.

“They are not typically going to get better — sometimes they get worse,” Whitfield said. “These children usually have significant healthcare needs, functional limitations, and typically use a lot of medical resources.”

One resource is the medical home model of care for medically complex children. In this model, nurses provide not only care but also coordination of care and can develop patient-focused care plans, which is necessary to keep everything running smoothly, according to Whitfield. These models refer to the nurse charged with care coordination in different ways, including as a nurse navigator, nurse case manager, health coaches, or other titles.

Children’s hospitals in the U.S. are offering models of care for children with medical complexity that aim to reduce readmissions and healthcare costs by supporting families who care for these children at home.

Nurses’ Role With Medically Complex Children

According to Whitfield, the medical home model of care for children with complex needs at Duke came about because pediatric hospitalists there realized these children needed much more specialized attention at discharge.

“They decided to create a program where they could enroll the child and family in the program while they’re in the hospital, help them transition home, and continue to follow them,” she said.

The model includes a 24-hour pager service that allows families to call physicians with urgent questions.

“Another nurse and I were the daytime care coordinators,” Whitfield said. “Families would call us with any issues they had — whether they needed help with symptom management or help with medication refills or authorization for different equipment. The home health nurse could also call us. There was one phone number or one point of contact.”

The focus of the model, she said, is to be a hub for families to help them navigate the healthcare system and the child’s health care.

These models often involve home visits by nurses and other providers and collaboration with community home health agencies, so nurses must have good communication and collaboration skills, according to Whitfield.

“When I was working at Duke, I would be in touch with the home health agencies, the durable medical equipment company, pharmacies, the outpatient clinics,” she said. “It’s a way to put all the puzzle pieces together so the patient doesn’t fall through the cracks and gets the care that they need, the services they need. A lot of the times, the parents don’t even know where to start.”

The programs may also address mental health needs by connecting families with social services.

There are many moving parts to this model, and nurses are involved in nearly every part, whether it’s a clinic nurse, home health nurse, a nurse responsible for discharging the child on the unit at the hospital, or the care coordinator, according to Whitfield.

Evidence Is Building to Support Hospital-Based Models

In 2018, the Children’s Hospital Association announced findings from the CARE (Coordinating All Resources Effectively (CARE) Award, a three-year, $23 million Center for Medicare and Medicaid Innovation project. For the project, 10 children’s hospitals in the U.S. collaborated with patients; families, primary care physicians, managed care organizations, and state Medicaid programs to implement innovative models of coordinated care.

Findings from the pilot project revealed that CARE significantly reduced hospital days by 32% and emergency department discharges by 26% across 8,000 enrolled children. This accounted for a 2.6% reduction to Medicaid spending in the first full year of operation, according to a news release.

“A major focus of the hospital at home is limiting hospitalizations, including emergency department visits,” Whitfield said. “I think that’s why the field is growing because hospitals are looking for ways to save money and reduce healthcare costs. A lot of hospital systems are looking to add programs like this for pediatrics.”

There’s no doubt that families also need the support and benefit. While parents receive training in how to take care of medically complex children at home, they also need a lot of reinforcement, re-education, and support to make sure that they’re doing it correctly, according to Whitfield.

“Even the best of families struggle with getting all that they need to take care of these kids,” she said.

The University of Utah, which reported on its 10-year experience with a model to care for children with medical complexity, which it calls the Comprehensive Care Program (CCP), lauded nurses’ participation.

“The CCP has included pediatric physiatrists, palliative care physicians, pediatric hospitalists, and general pediatricians. On-call coverage is provided 24 hours a day, 7 days a week. Integral to the program are advanced practice providers (physicians assistants and nurse practitioners) and complex care coordinators (registered nurses and medical assistants),” according to a paper published on the program in 2020.

Learn About Nearby Opportunities

Nurses who want to work with medically complex children can start by researching available job openings and their requirements, according to Whitfield. Some of these programs are hospital based, and some are primary care or community clinic based, she said. Job titles for nurses could include terms such as care coordinator or case manager.

Employers may require a case management certification or pediatric nursing certification.

“If nurses live near a children’s hospital, most likely they will have that kind of model or program. They’re called different things, but the majority have complex care in the title,” Whitfield said.

Whitfield said one positive to working within this type of care model is that the work gives nurses the opportunity to develop close relationships with patients and their families.

“You’re interacting day in and day out with the same group of patients and families, so you get to know them really well,” she said.

The close, long-term, collaborative relationship with patient is what many nurses deem a benefit of the job. And as a result of these programs, families feel more confident that their nurses and their healthcare teams are focused on their children’s needs, according to Whitfield.

“They feel like they’re not just a number,” she said.

At UPMC, our team of 20,000 nurses are leaders, advocates, clinical experts, and so much more. From experienced nurses to new graduates, we’re committed to empowering our nurses with the flexibility and support they need to thrive. With ten Magnet®-designated hospitals and a standard of innovative care across our system, plus a newly launched UPMC Travel Staffing agency for nurses, there’s no limit to the opportunity available on our team. We’re shaping the future of health care – and you can too.


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About the Author:

Lisette Hilton
Lisette Hilton, president of Words Come Alive, has been a freelance health reporter for more than 25 years and loves her job.

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