When a child is diagnosed with cancer, it often produces an overwhelming emotional response that tends to run the gamut of emotions from shock and denial to anger and anxiety. But that is usually just the beginning and parents don’t realize the magnitude of the journey on which they are about to embark on with their child. A multitude of medical tests and consultations are typically needed to determine a definitive diagnosis and course of treatment. There will be numerous cycles of treatment and evaluations. The young cancer patient’s path through the health care system can be complicated and confusing for families who are also dealing with their emotional realities.

Miller Children’s Hospital Long Beach launched a nurse navigator program to help patients and families navigate the complex health care system for those with chronic illnesses. The overall goal of the nurse navigator program is to ensure seamless and coordinated care among the physicians, the diagnostic tests and the cancer treatments, while offering education, support and guidance to help patients and their families cope with their challenges.

The nurse navigator program at Miller Children’s is disease-specific; and navigators are expected to not only work with the patients and families, but serve as a liaison between the hospital pediatric cancer program and referring physicians and surgeons. Two of the four designated nurse navigators were assigned to the hematology/oncology population and include solid tumors and high-risk leukemia/non-hodgkin lymphoma. Both Lisa Smalling, NP and Christine Yun, NP (respectively) are advanced practice nurses (APNs) with extensive oncology experience.

“It was important for us to designate nurse navigators to high-risk patient populations, so we can address the unmet needs identified by patients, families and the care team,” says Smalling. “Pediatric cancer, specifically solid tumors, requires multiple treatment schedules and testing and can often include the need for surgery.”

“Patients and their families should only have to focus on healing,” says Yun. “We want to help ease the additional anxieties and worries when entering into the unknown. We need patients and their families focused on returning to health and happiness.”

Sharyn Flavin, NP and Debra Resnick, CNS are the other two advanced practice nurses, each assigned to a specific disease population—including adult cystic fibrosis, pediatric congenital heart disease, that make up Miller Children’s nurse navigator program.

Benefits of Nurse Navigators to Pediatric Cancer Patients & Their Families:

• Serve as single-point of contact: Nurse navigators are the single point of access for all patients and families who enter the health care system. The navigator remains an ongoing, consistent point of contact for patients and families through the full continuum of their care.
• Guide (navigate) through health care system: Nurse navigators support patients as they move throughout their pediatric cancer journey, from diagnosis, to treatment and through follow-up care. This includes hand-offs between inpatient and outpatient settings, specialty consultations, research, test scheduling and palliative care if necessary. This results in fewer delays in treatments, improved communication between the care team and less confusion for patients and their families.
• Offer educational support: Nurse navigators provide valuable education to patients and families regarding treatment, nutrition, financial and psychosocial issues.
• Help to decrease hospitalization: Nurse navigators can decrease hospitalizations, including ER visits associated with complications in care, by identifying complications sooner and directing earlier interventions at the clinical level.
• Provide link to community: Nurse navigators already have established connections in the community and can easily refer patients to specific groups they would gain from, including support groups, housing assistance, transportation and financial assistance.
• Access to financial resources: Nurse navigators provide assistance regarding access to financial resources for patients and families with treatment-related costs, including drugs.
• Give emotional support: Nurse navigators are often the emotional support that parents need, when they’re child is battling cancer. Navigators also can connect patients and families to supportive and psychosocial programs and initiatives.
• Connection to research: Nurse navigators can identify appropriate research protocols and help answer many of the questions families have about research and the effects of clinical trials.
• Liaison to primary care physicians: Nurse navigators also are critical liaisons between Miller Children’s and the primary care or community physicians referring into the medical center. They can help answer questions and create less confusion for the parents.