Overview of Pediatric Oncology NursingCHAPTER 1

The first evidence of the existence of cancer was found among the ancient Greek and Egypt civilizations. Hippocrates, a Greek physician (460 to 370 BC), first used the term karbinos, meaning crab, to describe cancer. His theories and beliefs were virtually unchallenged for 2,000 years.

In 1872, a cancer ward containing 17 beds was opened in Middlesex, England. In 1884, Simms hospital was opened in New York City. Simms hospital later became Memorial Sloan-Kettering Cancer Center, the first hospital in the United States devoted to cancer care. Both of these institutions initially focused on the treatment of cancer in adults.

While nurses historically have always cared for patients with cancer, it is gratifying to see the interest and steady growth of cancer nursing over the years. Cancer Nursing was the term used for many years for this specialty field. The term ‘Oncological Nursing’ was apparently first used by the Department of Nursing Education, New York University.

Prior to the 20th century, rates of infant and childhood mortality were high due to infection and malnutrition, so many children died long before they would have been likely to develop cancer. In 1936, the eight leading causes of death in children were accidents, pneumonia, diarrhea, influenza, appendicitis, tuberculosis, diseases of the heart, and diphtheria—in that order. Cancer was ninth, with five deaths per 100,000 children per year (Foley & Fergusson, 2003). Health problems related to infectious diseases were so formidable that pediatric cancers were not the greatest concern. However with the advances in the field of medicine, as the commoner causes of childhood morbidity and mortality get conquered, childhood cancers are emerging as one of the leading causes of childhood morbidity and mortality.

Because of the changes brought about after the discovery of antibiotics, cancer became the second leading cause of death (after accidents), as is still the case today (Table 1.1).

Over the last decade, there has also been a steady widening of the horizon in terms of increasing knowledge about pathogenesis and the ever improving modalities of treatment for childhood cancers.

The first recognition of oncology as a specialty was the development of the first academic course devoted exclusively to cancer nursing at Teacher's College at Columbia University in 1947 (Craytor 1982). At that time, nurses who took care of children with cancer were pediatric nurses. Care of a child with cancer was short in duration and involved helping a family and child face death. For the most part, these children, who most commonly were diagnosed with leukemia, bled to death due to the unavailability of component blood therapies such platelets. Intravenous therapies were primitive; there were no central lines or parenteral nutrition. The nurses’ role entailed encouraging fulfillment of nutritional needs (nurses themselves often cooked special foods for a child), managing infections or the constant threat of infection, and supporting the family and the child. Struggling to prevent or treat infection with first-generation antibiotics involved working in reverse isolation with patients who had fever and neutropenia.

It was not until the mid-1970s the pediatric oncology nursing began to be recognized as a distinct subspecialty. With the advent of combination 3therapies in the late 1960s and 1970s patients had very specialized care needs. In addition, the increased survival of children undergoing treatment for cancer demanded a very broad-based body of knowledge. A group of pioneers in pediatric oncology nursing started to emerge. In 1974, the Association of Pediatric Oncology Nurses (APON) was formed by a group of nurses who had attended the Association for the Care of Children's Health Conference in 1973. That first session was attended by 40 nurses. With a shared enthusiasm, they began to explore ways to continue their communication. The group concluded that they needed their own professional association dedicated to the care of children with cancer. They believed that having their own group would meet their needs better than being a subgroup or special interest group of a larger, more general organization. The incorporation of APON took place in 1976 (Greene, 1983).

APON grew quickly, increasing in membership. Primary members are nurses, but a small percentage is composed of allied healthcare practitioners who work in the field including child life specialists, social workers, and pastoral care providers.

To acknowledge that most members care for hematology as well as oncology patients, the membership voted to become Association of Pediatric Hematology/Oncology Nurses (APHON) in 2006. The scope of care definition was expanded to include adolescents and young adults.

In 2006, APHON partnered with National Student Nurses Association (NSNA) and welcomed its first NSNA member in 2007. A specialty certification in pediatric oncology nursing was started in 1993.

Pediatric oncology nursing focuses on the care of children with cancer. The nurse's role has changed from one that focuses on the dying child and bereaved family to one that focuses on a broad knowledge base of childhood cancer, its treatment, side effects, and the impact on the child and the family. Because pediatric oncology nurses now work with a patient population that has an expectation of survival and probable cure, the philosophy of family-centered care is central to the practice. This philosophy is exemplified by nursing care that is mutually planned with the family from the time of diagnosis. The child is included in decisions at a developmentally appropriate level. Over the past 20 years, pediatric cancer has become, in many cases, a chronic disease that has changed the scope of practice for the pediatric oncology nurse to include the knowledge and care for long-term survivors. These children, who have the prospect of a life time ahead of them, need to receive cancer therapy with minimal long-term emotional and physical consequences. A pediatric oncology nurse works with the child and the child's family from the day of diagnosis, helping them adjust to the probable chronicity of the illness. The goal of care is to maintain as much normalcy as possible for the child and the family throughout treatment. The philosophy of family-centered care is “recognition that the family is the constant in the child's life” (Shelton, Jeppson & Johnson). This philosophy permeates the entire practice of pediatric oncology nursing. Issues related to long-term survivorship require nurses to be able to recognize the effects of therapy and the necessity of educating children about adult cancer 4risks that start in childhood, such as skin cancer and lung cancer related to smoking. Moreover, it also includes motivation for long-term follow-up to look for relapse and other long-term complications of the chemotherapy medications. At the same time, the pediatric oncology nurse is familiar with providing care for the child and family in the event of child death from the disease. The philosophy of family-centered care is practiced by facilitating care that will allow the child to die at home if the family wishes, as well as by organizing follow-up bereavement counseling for the child's family.

It is the philosophy of pediatric oncology nursing that the best care is provided to patients with cancer and their families. There is a team approach and the team includes the cancer center's healthcare team, the family, community healthcare workers, and school staff. A commitment to family-centered care, strong team collaboration, and maintaining as normal a lifestyle as possible for the child with cancer are the hallmarks of the philosophy of pediatric oncology nursing. These principles allow nurses to provide individualized care in the hope of cure for the child with cancer with in the child's own family and social environment.