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
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