References Association of Pediatric Hematology/Oncology Nurses (APHON). (n.d.). Strategic plan 2024–2026. https://www.aphon.org/wp- content/uploads/2024/07/APHON-Strategic-Plan-2024-2026.pdf Brandow, A. M., Carroll, C. P., Creary, S., Edwards-Elliott, R., Glass- berg, J., Hurley, R. W., Kutlar, A., Seisa, M., Stinson, J., Strou- se, J. J., Yusuf, F., Zempsky, W., & Lang, E. (2020). American Society of Hematology 2020 guidelines for sickle cell disease: Management of acute and chronic pain. Blood Advances, 4 (12), 2656–2701. https://doi.org/10.1182/bloodadvances.2020001851 Conway, M. F., Pantaleao, A., & Popp, J. M. (2017). Parents’ expe- rience of hope when their child has cancer: Perceived mean- ing and the influence of health care professionals. Journal of Pediatric Oncology Nursing , 34 (6):427–434. https://doi. org/10.1177/1043454217713454 Institute for Patient- and Family-Centered Care. (n.d.). Patient- and family-centered care . https://www.ipfcc.org/about/pfcc.html National Hemophilia Foundation. (n.d.). History of bleeding dis- orders. https://www.hemophilia.org/bleeding-disorders-a-z/ overview/history Power-Hays, A., Li, S., Mensah, A., & Sobota, A. (2020). Universal screening for social determinants of health in pediatric sickle cell disease: A quality-improvement initiative. Pediatric Blood & Cancer, 67 (1), e28006. https://doi.org/10.1002/pbc.28006 Siegel, R. L., Miller, K. D., Fuchs, H. E., & Jemal, A. (2022). Cancer statistics, 2022. CA : A Cancer Journal for Clinicians, 72(1), 7–33. https://doi.org/10.3322/caac.21708 U.S. Department of Health and Human Services. (n.d.). Healthy Peo- ple 2030 . Office of Disease Prevention and Health Promotion. https://health.gov/healthypeople/priority-areas/social- determinants-health World Health Organization. (n.d.). Social determinants of health . https://www.who.int/health-topics/social-determinants- of-health#tab=tab_1 History of Pediatric Oncology Nursing
that begins at diagnosis and continues throughout the trajec- tory of care. This may include living with a chronic condition, long-term survival, transition to adult care, and sometimes death resulting in the provision of bereavement care for the family. The philosophy of family-centered care is central to pediatric hematology/oncology nursing practice. The Institute for Patient- and Family-Centered Care (IPFCC, n.d.) defines patient- and family-centered care as “an approach to the plan- ning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care provid- ers, patients, and families.” The core concepts of patient- and family-centered care include respect and dignity, information sharing, participation, and collaboration. These concepts define the relationship between the patient, the family, and the health care team as a mutually beneficial partnership. This philosophy is exemplified by nursing care that is planned with the patient (at an age-appropriate level) and the family. Pediatric hematology/oncology nursing thrives on team collaboration. It is believed that the best care is provided to patients and their families when all members of the patient care team are actively involved. A commitment to patient- and family-centered care requires the family and patient to be in- volved in all decisions surrounding care based on their desired level of participation. It is helpful for the family to maintain as normal a lifestyle as possible throughout treatment, but this requires collaboration among all involved in the patient’s care. Pediatric hematology/oncology nurses provide care for a patient population that has an increasing expectation of sur- viving cancer and living longer with a chronic illness, while striving for continued improvements in quality of life. Care for survivors of childhood cancer continues to be a major focus of nursing practice within the oncology specialty. At the same time, the pediatric hematology/oncology nurse must be competent in providing care for the child and the family when the child is not expected to survive their disease or treatment. Despite the dramatic improvements in outcomes for children with cancer and blood disorders, the family’s needs remain tremendous as they cope with the child’s serious, life-threatening disease. For pediatric hematology/oncology nurses, support of children and their families must focus on open communication, verification of understanding, and ongoing promotion of hope. Patients and families look to the health care team for honest information but appreciate the addition of hope to assist them in moving forward on their journey, knowing that every patient’s journey is different and unique (Conway et al., 2017).
Deborah Echtenkamp
Nursing originally was generic in practice; nurses cared for all patients, regardless of age or diagnosis. It was not until the early 20th century that nurses began to specialize in particular types of care. With the development of the first academic
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Chapter 1: Pediatric Hematology/Oncology Nursing Practice
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