Eleven nurses make up the POGO Interlink Community Cancer Nursing Program and, together, they are on the front lines providing school support and care for children with cancer and their families. They meet families at diagnosis, and are with them through treatment, and, should it happen, through recurrence and palliation as well. Here’s how these nurses are making a difference by connecting them to much-needed community services.
Q. How are patients and their families referred to a POGO Interlink Nurse?
Families are referred to a POGO Interlink Nurse primarily when their child is diagnosed with cancer at the main treating hospital, through members of the healthcare team—ward or clinic nurses, pediatric oncologist or social workers. To raise awareness of our presence across the hospital, POGO Interlink Nurses make presentations to our colleagues to explain the role we play in caring for the child and their family. Families may also be referred to POGO Interlink through their POGO Satellite Clinic or by a physician when the child is returning to school after treatment. Because of the long-standing reputation of the program, families even hear about POGO Interlink Nurses through community agencies, like their Local Health Integration Network, or through their social circles by other parents of a child with cancer.
Q. What questions do parents typically ask when their child has cancer?
Whether in our hospital or home visits, many of the questions parents ask when their child has cancer are related to chemotherapy, finances and school. On the practical side, we review the educational information they received at discharge, like medications and treatment protocols. But, on the emotional side, parents have many questions about why their child got cancer. “Was it something I did?” “Was it exposure to cleaning chemicals?” “Was their cancer inherited?” Parents are also seeking answers to help them plan long term. “How long will treatment last?” “How soon will my child go into remission after a bone marrow transplant?” “How many medical appointments should I plan for?” Answers to these questions help with family decisions about when and which parent can return to work.
Q. How do POGO Interlink Nurses work in the community to support children with cancer and families?
Each family has unique needs but when a family receives the news of a new diagnosis, it is overwhelming. How they will manage financially is usually top of mind. POGO Interlink Nurses identify and help prioritize access to available resources and services. Financial assistance is usually the initial topic of discussion followed in time by other supports and services.
We work with agencies like the Local Health Integration Networks to acquire equipment and services to set children up at home when their care is complex. We also work with coaches and instructors in such extracurricular activities as Brownies and hockey. In one instance, a family asked us to speak with a group of neighbours to give the other parents and their children a better understanding of what they were going through.
And of course, we consider the grandparents who are not only concerned for their grandchild but also for their child, and who themselves may have their own health concerns.
Q. How do POGO Interlink Nurses work with the school system to support the education of a child with cancer?
POGO Interlink Nurses are in the unique position to work with the schools to support children with cancer, their siblings and parents, teachers, principals and classmates. We often advocate for families when there is a delay in the start of home instruction. POGO Interlink Nurses can visit the school and provide a classroom presentation, either in the child’s class or their sibling’s. The information we share is determined in collaboration with the parents and the child and our goal is to provide accurate and age-appropriate information, to answer questions and to involve students in supporting their classmate.
Providing customized school support can be complicated but it provides an additional layer of support for the child/family and relieves anxiety about academic expectations, return to school and peer relationships.
We have to consider how much personal health information can be shared. If the school is making the request for a presentation, we have to ensure the family is on board. And, in all instances, once the child with cancer is at an age to weigh in (usually Grade 3), the child must also consent. The more difficult school visits are when we are not able to be transparent about a child’s diagnosis or a recurrence of disease. In one situation, a family wanted us to talk to the class about the importance of hand washing for their “sick” child. They did not want to disclose their child’s cancer diagnosis. In such a situation, our role is to help educate the family about the importance of transparency in avoiding misguided assumptions. And even though a family might have been completely transparent at diagnosis, the recurrence of cancer and the fear of a poorer outcome this time around may make them more guarded during a subsequent classroom presentation.
We also have to be sensitive to the demographics of the classroom—if a student has had a family member with cancer, what will a classroom presentation about cancer trigger for them?
Q. How does the work of the POGO Interlink Nurse help others on the child’s healthcare team?
We work very closely with the healthcare team, sharing information from home and community to keep them informed about what is going on. Because POGO Interlink Nurses make home visits, we are privy to specific family dynamics. We are able to let others on the child’s healthcare team know if the parents are also caring for other sick family members, like a grandparent or sibling, or if there are other undisclosed situations. These kinds of disclosures may have an impact on the family’s ability to get to appointments and are important considerations in providing and receiving care.
POGO Interlink Nurses have the unique privilege to work in schools to support children with cancer, their siblings, teachers and the administrative team, and to be with the family for the entire trajectory of care. By being a link to community and hospital, POGO Interlink Nurses are vital in connecting many dots for all members of the child’s healthcare team in ways that help provide the right care in the right place for the best possible outcomes.
POGO Interlink Nurses work out of Children’s Hospital of Eastern Ontario (Ottawa); The Hospital for Sick Children (Toronto); Children’s Hospital (London); McMaster Children’s Hospital (Hamilton); and Northeast Cancer Centre, Health Sciences North (Sudbury). They serve their immediate and surrounding areas, including Barrie, Simcoe, Muskoka, Peterborough, the Greater Toronto Area and northern Ontario.
- Read The Childhood Cancer Care Plan for more about right care, right place, and integrated psychosocial care