A one-of-a-kind nurse navigation program offers personal attention to patients and families facing pediatric cancer diagnoses.

News | 2 years ago

Extra Support for Pediatric Oncology and Hematology Patients and their Families

A one-of-a-kind nurse navigation program offers personal attention to patients and families facing pediatric cancer diagnoses.

Cancer comes with a learning curve. As the number of pediatric hematology and oncology treatments grows – offering patients new options and effective outcomes – so do the complexities of those protocols. With each treatment plan comes a lot to learn and a lot to manage: appointments, medications, injections and more. At a time when families devote significant time and energy into caregiving, they also devote significant time and energy into the navigation of healthcare.

It can seem as though families must take on a new job on at the worst possible time. To ease this stress, Atrium Health Levine Children’s expanded its program to include pediatric nurse navigators who could help take on that job for them.

The Beginning of a Pediatric Nurse Navigation Program

In 2012, Atrium Health began a nurse navigation program for adult patients at Levine Cancer Institute. Experienced oncology nurses helped patients navigate cancer treatments, offering patients one-on-one support for making appointments, providing education and connecting them to support services. 

The response was positive and immediate, so soon after, Atrium Health adapted the nurse navigation model for pediatric oncology and hematology patients at Levine Children’s Hospital. To help young patients and families manage cancer treatments, as well as blood disorders like sickle cell anemia, pediatric nurse navigators became a trustworthy and consistent source of help and information.

Education has become an important aspect of the work of a pediatric nurse navigator. For patients and families, questions often arise between doctor’s appointments. As decisions regarding treatments approach, long conversations with experts become crucial in order to make educated choices. Nurse navigators offer this time and expertise. To do so, they become experts in these patients – they attend meetings with their providers, they stay current on patients’ progress – so they’re ready with answers when questions arise.

Whatever stage of treatment and however many providers the patient sees, the nurse navigator offers a familiar face through the process. They spend time with patients in the hospital when they’re admitted, and they teach families how to give injections at home, too.

“The best part about being a navigator is the relationships that we develop with families,” says Kathryn Carson, BSN RN CPHON, Clinical Supervisor of the Pediatric Hematology, Oncology and BMT Program at Levine Children’s.

“We see them in their lowest moments and as they get better and go onto the survivor clinic.”

One helpful tool that a nurse navigator provides to families seems like a simple one: a calendar. But this one calendar pulls together the many elements of a child’s treatment: clinic appointments, scans, medications, doses, and even a medication checklist. It distills a large amount of information from various sources into an easy-to-follow, day-by-day plan.

Helpful, Caring and Kind 

Levine Children’s didn’t model this program on any other pediatric nurse navigator program. This was a unique answer to the challenges that providers and nurses saw their patients and their families encounter. To gauge the effectiveness of this idea, the hospital system reached out to patients, families, providers and nurses to learn how nurse navigators impacted their experiences.

The responses showed just how well the program was working. 

Levine Children’s asked patients and families which words they’d use to describe their nurse navigator. The most frequent responses were “helpful,” “caring,” and “kind.” Other words patients and families used included, “advocate,” “lifesaver,” and “my everything.”

Providers and nurses also reported strong enthusiasm for this program. Providers found that nurse navigators had become an integral part of patient care and satisfaction at Levine Children’s Hospital, and nurses said that the navigators were an accessible resource to patients and their families. The survey asked these providers and nurses to identify which aspect of the nurse navigation program they found most helpful: patient education, care coordination, medication management, or serving as a direct contact for patients and their families. The results showed a nearly even split across all four.

The Next Step

The program at Levine Children’s Hospital has grown since its beginnings in 2012. Now, nurse navigators help pediatric patients dealing with sickle cell anemia, brain tumors, leukemia, solid tumors and more.

Due to the success of this program – for patients, families, providers and nurses – the nurse navigators are already dreaming about what’s next for the program. Could they begin to offer at-home visits, perhaps ensuring that medications are set up correctly? Could they have an app developed for patients who prefer digital content to paper instructions? Could the program grow, creating new positions in order to help more families? 

“The growth of this program shows the satisfaction of everyone with the role of nurse navigators,” says Julie Chasnis, RN, BSN, CPHON®, nurse navigator at Levine Children’s. “It shows the value this role has, and the high need there is for it.”