A CORE CURRICULUM Fifth Edition
Essentials of Pediatric Hematology/ Oncology Nursing
EDITORS Ruth Anne Herring Lauri A. Linder
SECTION EDITORS Terri Boyce
Elizabeth Duffy Mary Lynn Rae Kaye Schmidt
Essentials of Pediatric Hematology/ Oncology Nursing
A CORE CURRICULUM Fifth Edition Edited By Ruth Anne Herring Lauri A. Linder
Copyright © 2025 Association of Pediatric Hematology/Oncology Nurses 1660 International Dr Suite 600
McLean, VA 22102 All rights reserved.
Staff Executive Director: Allison Summers Graphic Designers: Kelsy McCarthy, Jen Lacey, Jeremy Haag
Copyright © 2025 Association of Pediatric Hematology/Oncology Nurses All rights reserved. No part of this book, except for brief quotations in critical articles and reviews, may be used or reproduced in any manner whatsoever without written permission. Printed in the United States of America Association of Pediatric Hematology/Oncology Nurses 1660 International Dr, Suite 600 McLean, VA 22102 eISBN 978-0-9905255-5-4
Note: As new scientific information becomes available through basic and clinical research, recommended treatments and drug therapies undergo changes. The authors, editors, and publisher have done everything possible to make this book accurate, up-to-date, and in accord with the standards accepted at the time of publication. The recommendations contained herein reflect APHON’s judgment regarding the state of general knowledge and practice in the field as of the date of publication. Any practice described in this book should be applied by the health care practitioner in accordance with professional standards of care regarding the unique circumstances that may apply in each situation. The reader is advised always to check product information and package inserts for changes and new information regarding dosage and contraindications before administering any drug. Caution is especially urged when one is using new or infrequently ordered drugs or treatments. Figures and tables in the book are provided as examples only. They are not comprehensive; nor do they represent endorsement by APHON of any particular institution or product. Any mention of specific products and opinions related to those products do not indicate or imply endorsement by APHON. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of this book’s content and make no warranty, expressed or implied, regarding the contents.
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Essentials of Pediatric Hematology/Oncology Nursing: A Core Curriculum, Fifth Edition
Contents
Acknowledgments. ................................................................................................................................................................................................................... ix
Contributors.............................................................................................................................................................................................................................. xi
Chapter 1: Pediatric Hematology/Oncology Nursing Practice Introduction. .............................................................................................................................................................................................................................. 3 Kaye Schmidt History of Pediatric Oncology Nursing..................................................................................................................................................................................4 Deborah Echtenkamp History of Pediatric Hematology Nursing..............................................................................................................................................................................6 Kaye Schmidt Association of Pediatric Hematology/Oncology Nurses......................................................................................................................................................8 Deborah Echtenkamp Chapter 2: Overview of Growth and Development and Psychosocial Concerns Introduction. ............................................................................................................................................................................................................................ 15 Elizabeth Duffy Development of Infants (Birth–1 Year)................................................................................................................................................................................15 Sharifa Al-Qaaydeh Development of Toddlers (1–3 Years)...................................................................................................................................................................................17 Sharifa Al-Qaaydeh Development of Preschoolers (3–5 Years)............................................................................................................................................................................20 Sharifa Al-Qaaydeh Development of School-Age Children (6–12 Years)...........................................................................................................................................................23 Katherine Bernier Carney Development of Adolescents (12–18 Years).........................................................................................................................................................................27 Kristin Stegenga Development of Young Adults (18–25 Years)......................................................................................................................................................................30 Kristin Stegenga Care of Families........................................................................................................................................................................................................................36 Sarah Fox-Smith Diversity, Equity, and Inclusion.............................................................................................................................................................................................46 Beth Savage Spirituality................................................................................................................................................................................................................................. 50 Jessica D. Murphy Chapter 3: Overview of Hematologic and Immune System Physiology Introduction. ............................................................................................................................................................................................................................ 55 Lauri A. Linder Overview of the Hematopoietic System ...............................................................................................................................................................................55 Christina Baggott Overview of the Immune System..........................................................................................................................................................................................58 Ruth Anne Herring and Patricia Wills Bagnato Chapter 4: Pediatric Cancers Introduction. ............................................................................................................................................................................................................................ 69 Christine Yun Malignancy and the Immune Environment.........................................................................................................................................................................71 Susan Reid and Kaaren Waters Epidemiology of Childhood Cancer ....................................................................................................................................................................................73 Kathleen Ruccione and Mindy Bibart Acute Lymphoblastic Leukemia.............................................................................................................................................................................................86 Holly Remington Kubaney
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Essentials of Pediatric Hematology/Oncology Nursing: A Core Curriculum, Fifth Edition
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Acute Myeloid Leukemia........................................................................................................................................................................................................94 Janet DeJean and Leah Garza Non-Hodgkin Lymphoma....................................................................................................................................................................................................102 Faye Willen Hodgkin Lymphoma.............................................................................................................................................................................................................110 Faye Willen Central Nervous System Tumors.........................................................................................................................................................................................117 Cheryl Fischer Neuroblastoma....................................................................................................................................................................................................................... 129 Mary Jo DeCourcy and Denise Mills Osteosarcoma......................................................................................................................................................................................................................... 137 Terri Boyce Ewing Sarcoma Family of Tumors.......................................................................................................................................................................................141 Lea Mayer Tumors of the Kidney............................................................................................................................................................................................................145 Lindsay Cole Rhabdomyosarcoma.............................................................................................................................................................................................................. 154 Lea Mayer Retinoblastoma. ..................................................................................................................................................................................................................... 160 Paula Belson Rare Tumors . ........................................................................................................................................................................................................................ 163 Leah Garza and Janet DeJean Histiocytic Disorders.............................................................................................................................................................................................................170 Patricia Wills Bagnato Chapter 5: Pediatric Hematologic Conditions Introduction. .......................................................................................................................................................................................................................... 179 Elizabeth Duffy Autoimmune Hemolytic Anemia........................................................................................................................................................................................179 Sameeya Ahmed-Winston Sickle Cell Disease.................................................................................................................................................................................................................183 Barbara Speller-Brown and Susan Harvey Thalassemia............................................................................................................................................................................................................................. 191 Susan Harvey Glucose-6-Phosphate Dehydrogenase Deficiency.............................................................................................................................................................196 Aleida C. Stark Hereditary Spherocytosis......................................................................................................................................................................................................198 Addie Durbin Bone Marrow Failure Syndromes........................................................................................................................................................................................200 Karyn Brundige Chronic Neutropenia............................................................................................................................................................................................................214 Susan Harvey Immune Thrombocytopenia................................................................................................................................................................................................218 Elizabeth J. Vessey Evans Syndrome and Autoimmune Lymphoproliferative Syndrome.............................................................................................................................221 Addie Durbin and Lauren Zakes Thrombosis and Thrombophilia..........................................................................................................................................................................................226 TaTonisha Green-Henderson and Lauri A. Linder Transplant-Associated Thrombotic Microangiopathy and Atypical Hemolytic Uremic Syndrome..........................................................................232 Marika Highberger and Lauri A. Linder Hemophilia............................................................................................................................................................................................................................. 239 Anne Gallegos Harvey Von Willebrand Disease........................................................................................................................................................................................................244 Anne Gallegos Harvey
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Chapter 6: Treatment Modalities Introduction. .......................................................................................................................................................................................................................... 251 Mary Lynn Rae and Ruth Anne Herring Diagnosis and Staging...........................................................................................................................................................................................................251 Ijeoma Julie Eche-Ugwu Clinical Trials.........................................................................................................................................................................................................................264 Elizabeth A. Gilger Surgery and Interventional Radiology................................................................................................................................................................................269 Kelly Coyne, Kristen Dalton, Jill Lee, and Barbara Lockart Radiation Therapy..................................................................................................................................................................................................................278 Megan Urban and Erin McDonough Chemotherapy........................................................................................................................................................................................................................ 292 Mary Lynn Rae Biologic Therapy....................................................................................................................................................................................................................298 Ruth Anne Herring Chimeric Antigen Receptor (CAR) T-Cell Therapy..........................................................................................................................................................328 Kimberly E. Powers and Amanda Williams Hematopoietic Cell Transplant............................................................................................................................................................................................340 Nancy A. Noonan and Linda Z. Abramovitz Gene Therapy.........................................................................................................................................................................................................................369 Misty Evans Traditional, Complementary, and Integrative Medicine..................................................................................................................................................373 Larissa N. Gadsby and Olivia Prebus Chapter 7: Side Effects of Treatment Introduction. .......................................................................................................................................................................................................................... 383 Terri Boyce Hematopoietic Side Effects...................................................................................................................................................................................................383 Jana Montez Immune System Side Effects................................................................................................................................................................................................387 Ruth Anne Herring Nervous System Side Effects.................................................................................................................................................................................................401 Lauri A. Linder Hearing Loss...........................................................................................................................................................................................................................414 Kathryn Matson Endocrine Side Effects...........................................................................................................................................................................................................417 Kasey Rangan, Kaaren Waters, and Lauri A. Linder Cardiovascular Side Effects..................................................................................................................................................................................................423 Yael Derman Pulmonary Side Effects.........................................................................................................................................................................................................432 Susan Reid Gastrointestinal Side Effects.................................................................................................................................................................................................436 Erin Friedman, Joan O’Hanlon Curry, and Lauri A. Linder Renal and Bladder Side Effects.............................................................................................................................................................................................453 Maura Padula Skin Side Effects.....................................................................................................................................................................................................................459 Amanda Fickbohm Musculoskeletal Side Effects.................................................................................................................................................................................................465 Sameeya Ahmed-Winston Nutritional Side Effects.........................................................................................................................................................................................................467 Tonya Lynn Bauer Growth and Development Side Effects...............................................................................................................................................................................470 Maritza Salazar-Abshire
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Pain.......................................................................................................................................................................................................................................... 475 Catherine Fiona Macpherson Emergencies............................................................................................................................................................................................................................ 489 Rita Secola and Diane Altounji Cancer-Related Fatigue.........................................................................................................................................................................................................504 Lei Cheng Chapter 8: Supportive Care Introduction. .......................................................................................................................................................................................................................... 509 Terri Boyce Central Venous Access .........................................................................................................................................................................................................509 Margaret T. Perry, Angie Blackwell, Renee Connor, and Mary Lynn Rae Nutrition Support..................................................................................................................................................................................................................520 Amanda J. Lulloff Infections: Prevention and Treatment.................................................................................................................................................................................528 Patricia Wills Bagnato and Austyn Grim Blood Product Support.........................................................................................................................................................................................................542 Teresa M. Conte Fertility Preservation and Sexual Health............................................................................................................................................................................551 Brooke Cherven, Barbara Lockart, and Stacy Whiteside Promotion of Physical Activity............................................................................................................................................................................................557 Clifton P. Thornton and Kenneth K. Seidl Jr. Health Promotion and Well Child Care.............................................................................................................................................................................566 Kari Wheeler and Kasey Rangan School Attendance and Reentry...........................................................................................................................................................................................574 Lei Cheng and Larissa N. Gadsby Chapter 9: Patient and Family Education Introduction. .......................................................................................................................................................................................................................... 579 Elizabeth Duffy Teaching According to Developmental Level....................................................................................................................................................................579 Brittany Wright Family Education...................................................................................................................................................................................................................585 Kathryn Tomlinson Critical Teaching-Learning Periods After a Cancer Diagnosis........................................................................................................................................589 Teresa Herriage The Pediatric Hematology/Oncology Nurse as Educator.................................................................................................................................................594 Jeneane Miller Chapter 10: Late and Chronic Effects of Treatment Introduction ..........................................................................................................................................................................................................................599 Lisa Bashore Nervous System Late and Chronic Effects .........................................................................................................................................................................624 Joanne Quillen Hypothalamic-Pituitary Axis Late and Chronic Effects ..................................................................................................................................................628 Elaine Pottenger and Nadia Wilson Thyroid Late and Chronic Effects........................................................................................................................................................................................635 Elaine Pottenger and Nadia Wilson Audiologic and Ophthalmologic Late and Chronic Effects.............................................................................................................................................638 Debra Eshelman-Kent Head and Neck Late and Chronic Effects...........................................................................................................................................................................643 Claire A. Carlson Cardiovascular Late and Chronic Effects...........................................................................................................................................................................650 Joanne Quillen and Yael Derman
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Essentials of Pediatric Hematology/Oncology Nursing: A Core Curriculum, Fifth Edition
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Respiratory Late and Chronic Effects .................................................................................................................................................................................654 Claire A. Carlson Gastrointestinal and Hepatic Late and Chronic Effects....................................................................................................................................................658 Claire A. Carlson Iron Overload ........................................................................................................................................................................................................................666 Stephanie Matthies Genitourinary Late and Chronic Effects.............................................................................................................................................................................671 Debra Eshelman-Kent Reproductive Late and Chronic Effects: Testes..................................................................................................................................................................676 Karina Danner-Koptik Reproductive Late and Chronic Effects: Ovaries ..............................................................................................................................................................680 Karina Danner-Koptik and Ruth Anne Herring Musculoskeletal Late and Chronic Effects .........................................................................................................................................................................684 Debra Eshelman-Kent Hematopoietic Late and Chronic Effects ...........................................................................................................................................................................691 Claire A. Carlson Immune Late and Chronic Effects ......................................................................................................................................................................................693 Claire A. Carlson Subsequent Malignant Neoplasms.......................................................................................................................................................................................697 Oliva Prebus and Kaaren Waters Psychosocial Late and Chronic Effects: Emotional ..........................................................................................................................................................704 Branlyn DeRosa, Lauren Daniel, and Lisa Schwartz Psychosocial Late and Chronic Effects: Employment ......................................................................................................................................................708 Branlyn DeRosa, Lauren Daniel, and Lisa Schwartz Psychosocial Late and Chronic Effects: Educational ........................................................................................................................................................711 Branlyn DeRosa, Lauren Daniel, and Lisa Schwartz Promotion of Lifelong Health..............................................................................................................................................................................................714 Karina Danner-Koptik and Yael Derman Chapter 11: Palliative Care and Care of the Terminally Ill Child and Their Family Introduction. .......................................................................................................................................................................................................................... 729 Kaye Schmidt Palliative Care ........................................................................................................................................................................................................................729 Amy C. Haskamp Children and Death ..............................................................................................................................................................................................................733 Beth Fisher End-of-Life Care: Physical Care ..........................................................................................................................................................................................736 Amy C. Haskamp End-of-Life Care: Psychosocial Care ..................................................................................................................................................................................743 Beth Fisher Legal and Ethical Considerations in End-of-Life Care.....................................................................................................................................................748 Kristin Stegenga Bereavement ..........................................................................................................................................................................................................................751 Cynthia Bell Professional Bereavement, Grief, and Loss........................................................................................................................................................................758 Michelle Schuster Chapter 12: Professional Practice Issues Introduction ..........................................................................................................................................................................................................................763 Kaye Schmidt Professional Nurse-Patient Relationships ..........................................................................................................................................................................763 Mary Newman Moral Distress in Nursing.....................................................................................................................................................................................................772 Michelle Schuster
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Essentials of Pediatric Hematology/Oncology Nursing: A Core Curriculum, Fifth Edition
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Ethical Decision Making in Pediatric Hematology/Oncology Nursing ........................................................................................................................774 Dyane Bunnell Legal Dilemmas in Pediatric Hematology/Oncology Nursing .......................................................................................................................................779 Julie Moreton Self-Advocacy, Resilience, and Well-being.........................................................................................................................................................................784 Teresa M. Conte and Janice Nuuhiwa
Index........................................................................................................................................................................................................................................ 792
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Essentials of Pediatric Hematology/Oncology Nursing: A Core Curriculum, Fifth Edition
Pediatric Hematology/Oncology Nursing Practice Chapter 1
CHAPTER OUTLINE
Introduction History of Pediatric Oncology Nursing History of Pediatric Hematology Nursing Association of Pediatric Hematology/Oncology Nurses
home care. Nurses play a key role in preparing patients and families for what to expect in the home and teaching about symptoms that will require the families to return to the clinic or hospital setting. Families are often unprepared for this role and may become overwhelmed with new responsibilities. This has created increased focus on patient and family education and increased demand for home care options and increased need for strong telephone triage programs in the outpatient setting. As a result, the acuity of outpatient care continues to become more complex. Awareness is growing surrounding disparities by race and ethnicity. Cancer occurrence and outcomes vary by racial and ethnic groups, explained by long-standing differences in socioeconomic status and access to care for prevention, early detection, and treatment (Siegel et al., 2022). Health care increasingly is emphasizing social determinants of health (SDOH). These determinants are conditions in the environment of our patients and families that affect a wide variety of health, functioning, and quality-of-life outcomes and risks (U.S. Department of Health and Human Services, n.d.). The World Health Organization (WHO, n.d.) defines SDOH as the nonmedical factors that influence health outcomes. Patients and families with sickle cell disease face the burdens of chronic disease and often racial disparities, both of which may increase their vulnerability to adverse SDOH (Power-Hays et al., 2020). APHON (n.d.) has incor- porated diversity, equity, and inclusion into its strategic plan, with intentional focus on understanding what training and resources are needed to better understand and serve more diverse populations—specifically, those living in vulnerable and marginalized family situations. As a specialty that involves the care of children of all ages as well as young adults up to age 39 years in some settings, pe- diatric hematology/oncology nursing requires a strong knowl- edge base in the normal growth and development of children, adolescents, and young adults. Care is focused on diagnosis, treatment, management of acute and chronic side effects and complications, recognition of psychosocial needs, long-term support for living with a chronic condition, and planning for long-term follow-up. Philosophy of Pediatric Hematology/Oncology Nursing Pediatric hematology/oncology nurses are essential contribu- tors to the successful treatment of children, adolescents, and young adults with cancer and blood disorders. As such, they recognize the importance of patient- and family-centered care
Introduction
Kaye Schmidt
Caring for a child with cancer or a blood disorder can be challenging and rewarding at the same time. The rewards come from the strong patient and family relationships developed over time, the growing treatment options leading to cures for patients with cancer, and improved length and quality of life for those with common hematologic disorders. Siegel et al. (2022) report the 5-year relative survival rate for all childhood cancers combined to have increased from 58% in the mid-1970s to 85% during 2011 through 2017 in children (0–14 years) and from 68% to 86% in adolescents (15–19 years). Advancements in supportive care, consistent enrollment in clinical trials, and expansion of treatment options such as immunotherapy and targeted therapy have all led to higher cure rates for childhood cancer. Hemophil- ia treatment has advanced from challenging times in the 1980s when transmission of HIV occurred through factor replacement products used to treat active bleeding to the administration of prophylactic treatment to prevent bleeds in the 21st century (National Hemophilia Foundation, n.d.). Advances in the treatment of sickle cell disease include prophylactic penicillin, early identification through new- born screening, and hydroxyurea to reduce the incidence of pain crises and acute chest syndrome. Current practices outlined in the American Society of Hematology (ASH) 2020 guidelines include prevention, diagnosis, and treatment of cardiovascular disease in children and adults with sickle cell disease (Brandow et al., 2020). Modern strategies now include transcranial Doppler ultrasound screening and use of chronic transfusion for those at high risk of stroke. Gene therapy is on the horizon as a potential cure for both hemo- philia and sickle cell disease. The challenges for nurses in caring for these patient popula- tions include the complexity of treatment, the need to keep up with constant changes in treatment strategies, and the need to manage active treatment, side effects, and supportive care while providing the psychosocial support required by the patient and family. Nursing is a dynamic profession requiring commitment to lifelong learning to ensure excellence in practice. As treatment strategies advance, fewer children are diag- nosed and treated exclusively in the inpatient setting. More therapies are being moved to the outpatient setting and to
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Essentials of Pediatric Hematology/Oncology Nursing: A Core Curriculum, Fifth Edition
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
course devoted exclusively to cancer nursing at Teachers College at Columbia University in 1947, oncology nursing was recognized as a specialty (Craytor, 1982). The first hospital unit dedicated to pediatric cancer opened in 1939 at Memorial Sloan Kettering Cancer Center. At that time, the nurses who cared for children with cancer were pediatric nurses who had no formal training in oncology. Care of a child with cancer was brief due to limited and unsuccessful treatments. Nursing care was focused on helping the child and family face the child’s certain death. Supportive care treatments were limited. Children were diagnosed most commonly with leukemia and often bled to death because of the unavailability of blood component therapies such as platelets and packed red blood cells. Intravenous therapies were temporary and difficult to administer; there were no central venous catheters or parenteral nutrition in that period. The nurse’s role focused on supporting nutritional needs (nurses themselves often cooked special foods for the child), assessing for the constant threat of infection, managing infections with limited antibiotics, and providing supportive care to the child and family. Struggling to prevent or treat infection with first-generation antibiotics involved working in a reverse isolation environment with patients who had fever and neutropenia. Children with cancer frequently died of overwhelming infection. As treatments for pediatric cancer evolved, so did the role of the nurse. In the 1950s, nurses were “tumor therapy nurses.” They administered chemotherapy, educated parents, coordi- nated care, and continued to provide comfort care as few pa- tients survived longer than a few weeks (Blacken et al., 2019; Foley & Fergusson, 2011). Jean Fergusson was one of the first tumor therapy nurses working directly with Dr. Sidney Farber to improve the care of pediatric oncology patients. Jean pio- neered many of the clinical skills we still employ at the bedside today. The importance of a multidisciplinary team approach to care was introduced during this time by Dr. Farber. Several advances in medicine and nursing occurred during the 1960s. Nurses played a greater role in clinical trials, performing phys- ical assessments and collecting data (Blacken et al., 2019). The need for and the development of an advanced practice nursing role was identified and realized. In addition, family-centered care became a core precept in pediatric care delivery (Foley & Fergusson, 2011). It was not until the mid-1970s that pediatric oncology nursing became recognized as a distinct subspecialty. With the advent of combination cancer therapies in the late 1960s and 1970s, patients developed specific care needs. In addition, the increased survival rates of children treated for cancer required
extensive nursing knowledge of cancer diagnosis and treat- ment, side effect management, and supportive-care strategies. In 1974, the Association of Pediatric Oncology Nurses (APON) was formed by a group of nurses who met at the Association for the Care of Children’s Health conference in 1973 (Greene, 1983). APON was based on the philosophy that pediatric oncology nursing is a specialty that requires specific knowledge and expertise in the care of children who have can- cer. Children with cancer are not small adults but rather indi- viduals who have special and unique needs. Childhood can- cers differ significantly from adult cancers. Pediatric cancers are generally systemic rather than organ based and require distinctly different treatment regimens. Genevieve Foley who served as APON’s third president (1977–1978) described the three key decisions made during her tenure: signing a contract for a textbook on pediatric oncology nursing, approaching the American Nurses Association (ANA) to develop national standards of practice for pediatric oncology nurses, and the decision not to merge APON with the Oncology Nursing Society (ONS) but to remain a separate organization dedicated to pediatric oncology (Foley, 2017). Today, pediatric oncology nursing is recognized as a distinct subspecialty within both oncology and pediatrics. This distinction was formalized with the development of specialty certification in pediatric oncolo- gy nursing in 1993 (Foley & Fergusson, 2011). In the late 1970s and 1980s nursing committees were formed within the established cooperative group structure of the Children’s Cancer Group (CCG) and the Pediatric Oncology Group (POG) (Foley & Fergusson, 2011). Networks were created among pediatric oncology nurses to facilitate their contributions to the disease committees throughout both CCG and POG. Nurses participated as members of protocol, disease, and scientific committees and contributed to concept design, trial analysis, and publications. Nurses were instru- mental in developing teaching tools for patients and families and were involved in writing treatment guidelines, assisting with the completion of protocol roadmaps, and serving as resources for other professionals in the cooperative groups (Ruccione et al., 2005). In 2000, CCG, POG, the National Wilms Tumor Study Group, and the Intergroup Rhabdomyosarcoma Study Group formed a unified group for cancer research named the Chil- dren’s Oncology Group (COG) (Withycombe et al., 2019). Pediatric oncology nurses are maintaining their important roles within COG. Nursing leaders in COG took an active role in structuring nursing research within the cooperative group (Zupanec et al., 2023). This initiative is paving the way
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Essentials of Pediatric Hematology/Oncology Nursing: A Core Curriculum, Fifth Edition
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