It takes a village to care for kids with medical needs

In an article published in 2011 Pediatricsthe authors drew attention to the increased survival rate of newborns born prematurely, with various congenital defects or chronic diseases, in addition to children who currently have a greater probability of surviving cancer and other diseases. And although children with complex medical problems make up only a small percentage of the general pediatric population, they account for the lion’s share of pediatric health care spending. “As many as 3 million children across the country suffer from complex conditions equivalent to cerebral palsy, cystic fibrosis, congenital heart disease or cancer, leading to frequent emergency room visits and subsequent hospitalizations. These children account for one-third of total health care spending and 40% of total Medicaid spending for kids,” according to the Children’s Hospital Association Press Release. According to Stephanie Whitfield, MSN, RN, CPN, a subject matter expert at Relias who worked at Duke Children’s Complex Care Service at Duke University, children with complex health problems have chronic, multi-system health conditions.

“It usually won’t get better, sometimes it will get worse,” Whitfield said. “These children typically have significant health care needs, functional limitations, and typically rely on multiple medical resources.”

One resource is a home-based model of medical care for children with complex medical problems. According to Whitfield, nurses provide not only care, but also care coordination and can develop patient-centered care plans, which is essential to ensuring that all care runs smoothly. These models refer to the nurse responsible for care coordination in a variety of ways, including as nurse navigators, nurse case managers, health coaches, or in other positions. Children’s hospitals in the United States offer models of care for children with complex conditions that aim to reduce hospital readmissions and health care costs by supporting families caring for these children at home.

The role of nurses in children with complex medical problems

According to Whitfield, Duke’s home-based model of care for children with complex needs arose because hospital pediatricians there realized that these children required much more specialized care upon discharge. “They decided to create a program where they could enroll the child and family in the program while they were in the hospital, help them get home and continue to follow them,” she said. The model includes a 24-hour pager service that allows families to call doctors with urgent questions. “Another nurse and I were day care coordinators,” Whitfield said. “Families called us with any problem – whether they needed help managing symptoms, refilling medications or obtaining approval for other equipment. The health visitor was also able to call us. There was one telephone number or one point of contact. ”

She added that the model is meant to function a hub for families to assist them navigate the health care system and child health care.

These models often involve home visits from nurses and other providers and collaboration with local home health agencies, so Whitfield says nurses should have good communication and collaboration skills.

“When I worked at Duke, I interacted with home health agencies, a durable medical equipment manufacturer, pharmacies and clinics,” she said. “It’s a method to put all of the puzzle pieces together in order that the patient doesn’t fall through the cracks and gets the care and services they need. Often parents don’t even know where to start out.”

Programs can also address mental health needs by connecting families with social services. There are many moving parts to this model, and nurses are involved in almost every part, whether it’s a clinic nurse, a community nurse, a discharge nurse in a hospital unit, or a care coordinator, according to Whitfield.

Evidence supporting hospital models is accumulating

In 2018, the Children’s Hospital Association announced findings with CARE (Effective coordination of all resources (CARE) Award, a three-year, $23 million project of the Center for Medicare and Medicaid Innovation. As part of the project, 10 children’s hospitals in the US worked with patients; families, primary care physicians, managed care organizations, and state Medicaid programs to implement innovative models of coordinated care. Pilot project results showed that for 8,000 enrolled children, CARE significantly reduced hospital days by 32% and emergency department discharges by 26%. This represented a 2.6% reduction in Medicaid spending in its first full year of operation, according to a press release. “The primary focus of the home hospital is on reducing hospitalizations, including emergency room visits,” Whitfield said. “I think that’s why this field is growing, because hospitals are looking for ways to save money and reduce health care costs. Many hospital systems plan to add such programs for pediatrics.” There is no doubt that families also need support and benefits. According to Whitfield, although parents receive training in how to care for children with complex medical problems at home, they also need a lot of support, re-education and support to make sure they do it correctly. “Even the best families struggle to get everything they need to care for their children,” she said. The University of Utah, which presented its 10 years of experience with a model of care for children with complex medical problems called the Comprehensive Care Program (CCP), praised the nurses’ participation. “The CCP includes pediatric physiotherapists, palliative care physicians, pediatric hospitalists and general pediatricians. On-call care is available 24 hours a day, 7 days a week. Advanced practice providers (physician assistants and nurse practitioners) are an integral part of the program. and comprehensive care coordinators (registered nurses and medical assistants)”, in accordance with Annex published article in this system in 2020

Find out about nearby opportunities

According to Whitfield, nurses who need to work with children with complex medical problems can start by researching available job openings and their requirements. Some of those programs are implemented in hospitals, others in primary health care or local clinics, she added. Nurse job titles may include terms equivalent to care coordinator or case manager. Employers may require case management certification or pediatric nursing certification. “If nurses live near a kid’s hospital, they may more than likely have such a model or program. They are called various things, but most have comprehensive care within the title,” Whitfield said. Whitfield said a positive thing about working in such a care model is that the job gives nurses the chance to develop close relationships with patients and their families. “You interact with the identical group of patients and families day-after-day, so that you get to know them very well,” she said. Many nurses consider a detailed, long-term and collaborative relationship with patients to be a bonus of their work. Whitfield said these programs give families greater confidence that nurses and health care teams are focused on kid’s needs. “They feel like they are not just a number,” she said.