When a child is diagnosed with cancer or a serious blood disorder, the journey ahead can be overwhelming for both patients and their families. As they step into what is oftentimes unfamiliar territory, caregivers must learn how to navigate complex treatment plans and frequent clinic visits — all while managing the emotional weight of their child’s diagnosis.
At the Reelin’ for Research Pediatric Hematology-Oncology Clinic at North Carolina Basnight Cancer Hospital, the clinical home of the UNC Lineberger Comprehensive Cancer Center, the outpatient care team has expanded to include care partners to help families navigate a child’s care journey.
Continuity of care that starts on day one
In spring 2022, the clinic introduced its first care partner — a registered nurse who serves as a dedicated point of contact for patients and their families.
Now a team of six, these individuals provide education, coordinate care and support families through every stage of treatment. Two care partners are focused on hematology patients — including those with sickle cell and other non-cancerous blood disorders — while four work with oncology patients.
“Although relatively new to our clinic, care partner nurses have greatly enhanced the care and clinic experience of our patients in many ways,” said Ian Davis, MD, PhD, division chief of pediatric hematology-oncology at UNC Health.
“Care partners review medication lists, assist with blood collection and patient charting, and generate treatment calendars for families to reference. Their role has greatly improved clinic operations and continuity of care among patients, not only making visits smoother for families but also allowing physicians and nurse practitioners to focus on clinical care delivery,” Davis said.
Functioning much like a patient navigator, care partners work alongside physicians and nurse practitioners as part of each child’s designated care team. From day one of treatment, they provide families with a clear roadmap of what to expect in each treatment phase and clinic visit.
Providing guidance beyond the clinic
Care partners also serve to ensure that families feel confident managing care at home, where much of their child’s outpatient treatment often takes place.
“Families spend maybe 10% of their time in the clinic, so a lot of what we do really sets them up for success at home,” said Brittany Cicala, BSN, RN, CPN, one of four cancer-focused care partners at the clinic.
“Whether it’s educating them on at-home chemotherapy instructions, helping them understand what symptoms prompt immediate care or answering non-urgent questions that come through the nurse triage line, we want to make sure every family feels supported beyond their time in the clinic,” said Cicala, who was one of the first care partners hired in the role’s introduction three years ago.
A familiar face that makes a difference
In addition to the clinical support they provide, care partners tend to become a familiar face to patients and form lasting relationships with the children and their families.
Cicala recalled a young patient whose journey underscored the importance of trust and consistency.
“I remember when he first got here, he was hesitant and scared to communicate with staff,” Cicala said.
“I worked with him over the course of three weeks to get his PICC line changed after it had come out at home and became infected. Slowly but surely, seeing my face every day helped him warm up to being in the clinic and eventually, he started greeting me with a smile when I would arrive in the mornings.
“It was so special watching him go from being this scared eight-year-old to opening up and trusting us,” Cicala said.
Support into survivorship
For cancer-focused care partners, their role doesn’t end when a patient’s treatment does. In addition to guiding families through active care, these care partners also help develop a patient’s survivorship care plan — a comprehensive document that outlines their full medical and treatment history, as well as ongoing health considerations for future physicians.
“Our goal is to provide families with a resource they can reference long after treatment ends,” Cicala said. “And even after they transition to survivorship, we remain a contact for them for up to a year to ensure they feel supported in that next phase.”
A growing role with lasting impact
Since its introduction, the role of care partners has transformed the outpatient experience for patients and their families. Whether answering questions, coordinating treatment or offering other support, care partners have become an integral part of the pediatric care team at the N.C. Basnight Cancer Hospital.