Principles & Practice of Pediatric Oncology
5th Edition

Nursing Support of the Child with Cancer
Marilyn J. Hockenberry
Nancy E. Kline
Pediatric oncology nurses are essential contributors to the successful treatment and cure of children with cancer. As a member of the multidisciplinary care team, the nurse works with physicians, social workers, child life specialists, schoolteachers, psychologists, chaplains, and other specialists to provide comprehensive care for the child and family. Innovative technologies require that nurses caring for children with cancer become experts in critical care management as well as in the provision of psychological support to the child and family. The expert oncology nurse often functions as the coordinator of patient care, facilitating communication among team members.
Pediatric oncology nursing roles are diverse and allow for opportunities in direct patient care, education, management, and research. Advanced practice nurses have made significant contributions toward providing continuity of care for children with cancer. Children are followed by advanced practice nurses in various patient care settings including the hospital, outpatient setting, and home environment.
Nurses caring for the child with cancer in the hospital setting must keep pace with the complex advances in treatment as well as with advanced technology. The nature of acute care settings will change even more dramatically in the future. As the trend in pediatric oncology continues with more therapies being administered in clinic setting, inpatient services will be largely used for the management of acute life-threatening complications or for the administration of therapies that cannot be administered in the ambulatory setting. Future inpatient care settings will consist of multiple intensive care units, offering highly specialized scientific and technologic services.1
The nurse working with children in these tertiary care settings must be able to recognize short-term as well as long-term physical needs.2 Expert nursing care requires the ability to assess the child’s condition based on extensive knowledge of childhood cancer, to develop a plan of care in collaboration with other healthcare professionals, to provide direct nursing care for the child, and to evaluate the child’s condition based on specific nursing outcomes. Nurses caring for children with cancer must competently manage symptoms of common side effects of treatment such as nausea and vomiting, pain, mucositis, fatigue, and anorexia. Hospital nurses are integral to providing education and support to families with a child newly diagnosed with cancer. Crisis intervention and the ability to provide emotional support are essential. The nurse also frequently serves as a child advocate, ensuring proper preparation for invasive procedures and treatment. Because many patients receive much of their treatment in the hospital, nurses develop long-term relationships providing continuity of care for these families.
The nurse working in the clinic setting is often the direct link between the community and the cancer treatment center. Pediatricians who follow cases of children with cancer in community settings may communicate directly with the nursing staff regarding specific side effects or laboratory findings. Clinic nurses frequently provide education regarding administration of chemotherapy in the pediatrician’s office. Extensive knowledge of the side effects of treatment allows the nurse to provide families with an understanding of what may occur at home. Information regarding specific restrictions and changes in activities for the child is communicated with the family.
Children are now receiving in the clinic setting chemotherapy that could previously be administered only in a hospital. The use of sedation before invasive procedures is common practice in many cancer centers. Clinic nurses have extensive knowledge regarding assessment and management of children receiving complicated chemotherapy regimens and sedation. As a consequence of intensive chemotherapy regimens, blood product support is also frequently necessary and is administered in the outpatient setting by nurses who are knowledgeable regarding possible reactions and who expertly manage side effects related to blood product transfusion.
Families who have children with cancer return to the outpatient setting frequently for treatment and follow-up. The nurse becomes a major support to the child and family throughout treatment. Once therapy is completed, families continue to use the nurse as a major resource for their questions and concerns.

Nurses in administrative roles face the challenge of implementing cost-effective, high-quality care to increasingly ill patients who have complex healthcare needs. These nurses must have an extensive background in nursing as well as in business. Managed care is changing healthcare, and nurses in administration will be instrumental in coordinating care in accordance with specific healthcare plans in the future. Administrative nurses must support the specialization of oncology nursing while meeting the demands of changing healthcare systems. A major concern is to direct efforts toward recruitment and retention of professional, skilled pediatric oncology nurses who will deliver high-quality care to these children and their families.
One of the most significant contributions of nursing has been the development of advanced practice roles.2 Such nurses are experts in the clinical care of children with cancer. They serve as the coordinators of care among hospital, clinic, and community settings. The nurse practitioner must understand the assessment and management of children with cancer. Proficient in performing physical assessments and diagnostic procedures such as bone marrow aspiration and lumbar punctures and in diagnosing common pediatric illnesses, the nurse practitioner role has evolved rapidly in the outpatient setting.
Since the conception of their role more than 30 years ago, nurse practitioners have demonstrated ability to provide appropriate, cost-effective care for a range of health services, including primary care, management of chronic illness, and treatment of episodic health problems. In recent years, positions for nurse practitioners have been created in specialty areas, such as oncology, as physicians and healthcare administrators have recognized the quality and cost-effectiveness of the role.3
Clinical nurse specialists use their expertise by helping other team members to coordinate care, usually during the patient’s hospitalization. The clinical nurse specialist complements the role of the nurse practitioner by providing continuity between the clinic and the hospital. Whereas the nurse practitioner directly cares for a selected population of patients, the clinical nurse specialist often serves as a coordinator of care for all children who are hospitalized. Communication between staff nurses and the clinical nurse specialist is key in providing information from the healthcare team managing the child’s care. The clinical nurse specialist is instrumental in implementing organized teaching programs for parents and children. Both the clinical nurse specialist and the nurse practitioner serve as resources for other nurses.
Advanced clinical practice in pediatric oncology nursing requires preparation at the master’s degree level. Graduate programs are designed to prepare advanced practice nurses to think independently, to function autonomously, and to participate actively within an interdisciplinary team.4,5 An extensive knowledge base in physiology, pharmacology, child health assessment, growth and development, health promotion, disease prevention, and management of common problems of childhood is essential. Once a foundation of knowledge regarding well-child care is established, graduate-nursing programs should provide opportunities for experiences in the care of the child with cancer. Didactic content in the pathophysiology, diagnosis, and management of the various types of childhood cancer is essential, yet general pediatric graduate programs often do not include these topics in the curriculum. Nurses seeking to specialize in pediatric oncology should pursue opportunities to care for children with cancer during graduate nursing study.
Many advanced practice nurses who join comprehensive childhood cancer centers have limited knowledge of the diagnosis, treatment, and management of cancer. Cancer centers must consider developing innovative educational opportunities that provide the knowledge necessary to pursue advanced practice roles. Short-term fellowship programs that allow for clinical participation under the supervision of experienced nurses may become an important investment as nurses’ functions become more independent in the future.6
Nurses with diverse educational backgrounds and experience are also involved in research roles. Educational preparation influences the type of research role nurses pursue.
Baccalaureate level nurses typically participate in research by evaluating its applicability for nursing practice. They assist in the identification of research problems and are involved in research implementation by serving as data collectors and by obtaining subjects for study.
Numerous cancer centers also use baccalaureate-prepared research nurses as coordinators of clinical trials. The research nurse ensures that the study is implemented according to protocol and that data collection is accurate. Phase I clinical trials are excellent examples of studies coordinated by research nurses; the research nurse implements labor-intensive regimens according to protocol and closely monitors side effects and toxicity data.
In 2003, the National Institute of Nursing Research convened a working group to evaluate the state of the science of pediatric oncology nursing.7 This conference reviewed the knowledge gained from biobehavioral and sociocultural research findings and identified gaps that are important for future research endeavors. Examples of important research areas for nursing include symptom assessment and management, quality of life, long-term survivors, and end of life care. The pediatric oncology nurse with a master’s degree has the expertise to identify practical problems for clinical relevance and to facilitate implementation of nursing research. The nurse in advanced practice enhances the value of research among other nurses by participating in collaborative research endeavors. Doctoral prepared nurses are increasing in number and serve as nursing research directors at numerous institutions. They promote interest in research and are instrumental in implementing funded nursing research projects.
The image of pediatric oncology nursing is reflected in the standards of care practiced daily by nurses. The outcome

standards of pediatric oncology nursing practice, established by the Association of Pediatric Oncology Nurses, reflect the comprehensive involvement of nursing in the care of children with cancer.8 These standards assist in identifying the future focus of pediatric oncology nursing care and include providing expert clinical care, coordinating patient and family education, facilitating psychosocial support, promoting growth and development, following up long-term survivors, and continuing professional development. These major role functions are the framework for nursing care discussed in this chapter.
Nurses caring for children with cancer must keep pace with the complex advances in treatment and technology. Expert nurses are able to assess the child’s condition using extensive knowledge of childhood cancer, to develop a plan of care in collaboration with other healthcare professionals, to provide direct nursing care, and to evaluate the child’s condition based on specific nursing outcomes. Pediatric oncology nurses play a major role in managing disease-related and treatment-related side effects, coordinating care for central venous lines, administering chemotherapy, and preparing the child for invasive procedures. As more children are treated in the outpatient or home environment, nurses have become the coordinators of care in these settings.
Managing Side Effects
Children with cancer frequently experience side effects and often live with unrelieved symptoms. These distressing symptoms occur frequently owing to aggressive therapy regimens designed to cure the disease.
Recently, three studies have addressed various distressing cancer events and symptoms from the perspective of the child and their families.9,10,11 Hedstrom and others9 discovered the most common causes of distress in a group of 121 children with cancer were treatment related pain, nausea, and fatigue. Collins11 described the most common physical symptoms (prevalence >35%) in a group of 160 children with cancer as lack of energy, pain, drowsiness, nausea, cough, and lack of appetite. Woodgate and Degner10 evaluated expectations and beliefs about childhood cancer symptoms in a group of 39 children and their family members and found that these individuals expected to experience suffering as part of the cancer treatment. The families felt unrelieved or uncontrolled symptoms were necessary for cure. Docherty12 recently completed a review of the published research literature on symptom experiences of children and adolescents with cancer. The most frequent symptoms found in the literature include infection, bleeding, anemia, nutritional concerns, nausea and vomiting, mucositis, fatigue, and pain. This review revealed no longitudinal symptom management study designs, limited use of conceptual models or theories, frequent adaptation of adult instruments as symptom measures, and no attention to the impact of these symptoms on the children’s lives.
Myelosuppression and Consequent Infection
Chemotherapy agents and radiation therapy cause myelosuppression. In addition, certain malignancies that metastasize to the bone marrow (e.g., leukemia, lymphoma, neuroblastoma, sarcomas) cause a decrease in the number of normal blood cell precursors. When the myelosuppressive effect is severe enough, the child becomes predisposed to infection, anemia, or bleeding, depending on which blood cell line is affected.
Infection resulting from neutropenia may be life threatening (see Chapter 41). After cytotoxic chemotherapy is administered, or during long courses of radiotherapy, the bone marrow cannot produce an adequate number of neutrophils to protect against infection. A patient with an absolute neutrophil count of #500 mm3 is considered neutropenic. Children who have prolonged periods of neutropenia (i.e., ≥7 days) are at high risk for developing infection. The neutropenic child will not demonstrate the normal signs and symptoms of infection, and fever may be the only indication that infection is present.
The nurse plays an important role in minimizing the risk of infection in these children. Most infections in the neutropenic child are caused by endogenous flora (e.g., Staphylococcus, Escherichia coli, Candida) and adequate protection from infection is the best defense. Handwashing before and after contact with each patient minimizes the risk of microbial transmission, and is the single most important method of preventing nosocomial infection.13 Administration of biologic response modifiers [e.g., granulocyte colony stimulating factor (G-CSF), granulocyte-macrophage colony stimulating factor (GM-CSF)] has decreased the duration of neutropenia after cytotoxic chemotherapy. The use of these agents for patients with a short period of neutropenia is generally not indicated (see Chapters 40 and 41).14
When a neutropenic child develops fever, blood cultures from both central [e.g., implanted central venous access device (CVAD)] and peripheral sources are obtained, as well as cultures of other appropriate body fluids or sites (e.g., urine, stool, throat, wound, lesions, catheter exit site). Broad-spectrum intravenous (IV) antibiotics are initiated. Antibiotic therapy is modified based on the culture and sensitivity of the organisms isolated.
Nursing care of the child hospitalized with fever and neutropenia is directed toward monitoring for signs of septic shock. Vital signs must be monitored frequently to identify temperature fluctuations (very low or very high), heart rate, respiratory rate, and blood pressure. Because hypotension is usually a late sign of shock in children, peripheral perfusion should be checked frequently. Delayed capillary refill and tachycardia are early signs of impending shock. Strict intake and output must be measured to monitor renal function. The child’s level of consciousness must be assessed continually for irritability, lethargy, or unresponsiveness. Temperature measurement by the rectal route and the use of suppositories and enemas must be avoided. Mouth care and perianal hygiene must be done on a regular schedule. If the child is febrile (temperature >38.5°C), blood cultures are obtained, and acetaminophen administered. The parents should be given an opportunity to ask questions during the period of acute serious illness (e.g., fever and neutropenia, septic shock) because this time is often confusing and stressful for the family.

Parents and children must be educated regarding the prevention of infection. All members of the family must practice strict handwashing to decrease the spread of pathogens among each other. The parents must know when the period of neutropenia is likely to occur following chemotherapy. If fever is suspected, they should take the child’s temperature by the oral or axillary route, but never rectally. If the child’s temperature is 38°C on three or more occasions in a 24-hour period, or 38.5°C or higher, the parents should notify the nurse or physician immediately and should not administer acetaminophen unless instructed to do so (Table 44.1).
Adequate nutrition is an important component in the prevention of infection. Cancer treatments often cause anorexia, nausea, and vomiting, which make adequate dietary intake difficult to achieve. Food should never be forced on the child, and should alternate feeding plans be required (e.g., gastric tube feedings, total parenteral nutrition), care must be taken to use the appropriate sterile technique to prevent infection.
Primary varicella-zoster virus infection can present a potentially life-threatening danger to the immunosuppressed child. (See Chapter 41.) Therefore, if the child has never had chickenpox, the parents must educate school nurses, teachers, neighbors, and parents of playmates regarding this danger so that they can be notified if any contacts develop chickenpox. Infected persons are contagious for 1 to 2 days before the appearance of the vesicular rash and throughout the duration of eruption until all lesions have crusted. If the immunocompromised child is directly exposed to an infected person, varicella-zoster immune globulin (VZIG) (125 units per 10 kg, maximum dose, 625 units) should be administered intramuscularly within 96 hours.15 Direct exposure is defined as having an infected household contact, 1 hour or more of indoor play with an infected person, or hospital exposure through prolonged face-to-face contact with an infected healthcare worker or patient. The exact duration of effectiveness of VZIG is unknown. If another exposure occurs longer than 3 weeks after the injection, the dose is administered again. Hospitalized children with varicella-zoster virus must be placed in strict isolation for up to 28 days after exposure. Immunocompromised children who develop varicella infection may be treated with IV acyclovir alone,15 although some children with mild or uncomplicated cases may receive IV acyclovir followed by oral acyclovir and reduce the duration of IV treatment and hospitalization.16 Healthcare workers who have not had chickenpox should be advised to receive the varicella vaccine and should follow their institution’s guidelines regarding any special precautions following the immunization.17
   Herpes simplex
   Respiratory viruses
Gram-Negative Bacteria
   Escherichia coli
   Pseudomonas aeruginosa
   Klebsiella pneumoniae
   Enterobacter sp.
Gram-Positive Bacteria
   Coagulase-negative staphylococci
   Staphylococcus aureus
   Streptococcus pneumoniae
   α-Hemolytic streptococci
   Group A β-hemolytic streptococci
   Toxoplasma gondii
   Pneumocystis carinii
   Candida sp.
   Aspergillus sp.
After an individual has had chickenpox, varicella-zoster virus persists in the dorsal root ganglia in a latent form. Immunosuppression from chemotherapy or radiation can reactivate the virus resulting in herpes zoster (“shingles”). Vesicular lesions appear in the distribution of one to three sensory dermatomes. The eruption of lesions is often preceded by a prodrome of pain or tingling. Some immunosuppressed patients may not manifest the typical vesicular cutaneous changes and may only describe sensations of pain or tingling, which may or may not lie within a dermatome. Treatment of patients who have zoster is similar to that of patients with primary varicella infection.15
Nursing care of the child with varicella infection requires strict attention to good hygiene and hydration, fever control, and management of pruritus or pain. These children must be continually assessed for evidence of disseminated infection or secondary bacterial infection. Hemorrhagic varicella is more commonly seen in immunocompromised patients. Ocular involvement, pneumonia, hepatitis, meningitis, and encephalitis (i.e., progressive disseminated varicella) may occur.18
Pneumocystis carinii generally is not pathogenic in a healthy host, but it can cause a life-threatening pneumonia [Pneumocystis carinii pneumonia (PCP)] in persons who are immunosuppressed. Fortunately, this condition is almost entirely preventable. Trimethoprim-sulfamethoxazole (TMP-SMZ), 150 mg per m2 of the trimethoprim component, by mouth divided into two doses, given three consecutive days each week, is adequate prophylaxis. For patients who are unable to take TMP-SMZ because of hypersensitivity reaction or bone marrow suppression, dapsone, 2 mg per kg (maximum 100 mg per day) by mouth, given once daily, is also effective. Aerosolized pentamidine 300 mg per dose is another option for PCP prophylaxis and is administered once monthly.15,19 The patients must be old enough (usually 5 years of age or older) to cooperate with aerosolized drug administration via the Respirgard II inhaler and must come into the clinic to receive the medication. Pentamidine may also be given intravenously, but it is expensive and associated with side effects (e.g., hypotension, hypoglycemia). Although pentamidine has been shown to prevent PCP, its administration is labor intensive and it is certainly more costly than the medications that can be administered at home.

Respiratory syncytial virus (RSV) and cytomegalovirus (CMV) are other potentially problematic infections for children with cancer, especially those undergoing bone marrow transplantation. Other respiratory viruses, including adenovirus and influenza, generally do not cause more severe disease in children with cancer than in more immunocompetent patients.
Administration of Immunizations
Live virus vaccines are contraindicated in children receiving immunosuppressive therapy because of potentially serious adverse effects. Vaccine-strain poliomyelitis, measles virus, and vaccinia have been reported in immunocompromised children after administration of live virus vaccines.15 Immunologically normal household contacts of immunocompromised children should receive inactivated poliovirus (IPV) vaccine, because live poliovirus is transmissible following immunization with oral poliovirus vaccine (OPV). Live measles, mumps, and rubella (MMR) vaccine can be administered to the siblings and household contacts of immunosuppressed children because these viruses are not transmissible after vaccination. Varicella vaccine has been given to nonimmune household contacts of children with cancer without transmission of the virus to the immune suppressed child. Therefore, this vaccine is recommended for susceptible contacts of these children.15,20 Children who have received chemotherapy or radiation therapy should not be given live virus vaccines until at least 3 months after immunosuppressive treatments have ceased. The degree of immunosuppression and its duration may vary among patients, however.20 Other routine childhood immunizations, such as diphtheria-tetanus-pertussis, Haemophilus influenzae type-b conjugate, and hepatitis B, can be administered safely on a standard schedule, although immunogenicity may be reduced. Children who have Hodgkin’s disease and are 24 months old or older should receive pneumococcal and meningococcal vaccines because these children are at increased risk of infection from these organisms.15,20
Bleeding and Anemia
Children with cancer are at risk of developing bleeding related to thrombocytopenia or coagulopathy. Anemia may occur because of blood loss or a decrease in the production of red blood cells related to bone marrow suppression from cancer treatment or malignancy (see Chapter 40). Children who are at risk for bleeding (platelet count below 100,000 per mm3) should be placed on precautions, so the potential for bleeding can be decreased. Spontaneous internal hemorrhage does not occur until the platelet count is 20,000 per mm3.21,22 Nurses should educate the family and child to avoid ibuprofen, aspirin, and aspirin-containing products. Minor pain and fever without neutropenia are treated with acetaminophen. The child’s body temperature should not be taken rectally. Venipunctures and other invasive procedures (e.g., lumbar puncture and bone marrow aspiration) should be performed with caution when platelet counts are low.
The use of razors should be avoided, and a soft toothbrush should be used for dental care. Children should avoid using dental floss and not eat or chew sharp foods (e.g., tortilla chips, ice) to prevent gingival bleeding. Adolescent female patients may be given oral contraceptives or hormone therapy to suppress menses to decrease the risk of excessive bleeding. Contact sports or activities that may cause injury or bleeding (e.g., football, soccer, bicycle riding, skateboards, tree climbing) should not be permitted during periods of thrombocytopenia.
If the child experiences epistaxis, the parents should be instructed to pinch the child’s nostrils together with a gauze pad held between the thumb and index finger for at least 10 minutes. If there is persistent epistaxis, or if the patient experiences hematuria or hematochezia, the child should be evaluated at the hospital. If the child is admitted to the hospital with thrombocytopenia, nursing interventions include measures to prevent injury, inspection of body fluids for evidence of blood, monitoring of vital signs and peripheral perfusion for evidence of blood loss, and administration of platelet transfusions.
Children may become anemic from blood loss or as a consequence of chemotherapy-induced myelosuppression. Children are amazingly resilient and tolerate low hemoglobin concentrations well. Signs and symptoms of anemia include pallor, headache, dizziness, shortness of breath, fatigue, tachycardia, and heart murmur. Packed red blood cell transfusion is generally required when the hemoglobin falls below 7 g per dL.
When red blood cell transfusions are required, leukocyte-depleted or irradiated blood products are often administered. Lymphocyte reduction of packed red blood cells and platelets is used to prevent HLA-alloimmunization and refractoriness to allogeneic platelet transfusion, nonhemolytic transfusion febrile reactions, and graft-versus-host disease (GVHD).23,24 Irradiation of cellular blood components is used to prevent posttransfusion GVHD.25 The decision to administer lymphocyte-depleted or irradiated blood products depends on the child’s immunologic status and on the intensity of the chemotherapy regimen. All children who are bone marrow transplant recipients should receive leukocyte-depleted, irradiated blood products.
Transfusion of blood products may cause transfusion reactions, manifested by fever, chills, body aches, urticaria, pruritus, and, in severe cases, wheezing and respiratory compromise. If a transfusion reaction occurs, the transfusion should be discontinued and IV normal saline infused. Antihistamines, steroids, or acetaminophen may be administered.26,27 Parents may prefer to limit blood and platelet transfusions to designated donor products if the situation is not an emergency or if the child is not a potential bone marrow transplant recipient. The use of designated donor blood products may reduce the incidence of transfusion reaction if a parent or sibling’s blood products are compatible. The institutional blood bank can provide information and instructions regarding specific designated donor programs.
Nutritional Changes
Adequate nutrition continues to be a major concern during childhood cancer treatment. Altered nutrition has been reported in between 8% to 32% of all children treated for cancer.28 Alterations in nutritional status in the child undergoing cancer treatment are common (see Chapter 42). The

disease itself and the side effects of therapy (e.g., nausea, vomiting, anorexia, stomatitis, dysphagia, changes in taste) often interfere with adequate caloric intake. Conversely, the use of glucocorticoids (i.e., prednisone, dexamethasone) causes an increased appetite and an intense craving for salty foods. When these drugs are given, weight gain may be excessive. In either case, the patient’s weight should be checked at each visit and plotted at regular intervals on a growth curve.
When metabolic needs exceed caloric intake, the child may benefit from a nutritional supplement given between meals. Methods to increase caloric intake include providing high-protein snacks or high-calorie ingredients in recipes. Small, frequent meals may be more appetizing if the child is suffering from nausea. If the child continues to lose weight, or drops off the growth curve, a dietitian should be consulted. The child may require total parenteral nutrition or placement of a feeding tube to prevent malnourishment29,30 (see Chapter 42).
Less than 10 research articles were published between 1998 and 2003 on clinical nutrition issues in children with cancer. Nutrition in pediatric bone marrow transplant patients and the use of nasogastric tube feedings in high-risk cancer patients were areas of research focus found in the medical literature in the last 5 years.31,32,33 Nursing research articles were found evaluating enteral feedings in pediatric oncology patients34 and parental perception of their child’s food intake.35
Nausea and Vomiting
Cancer chemotherapy agents are emetogenic, and nausea and vomiting can severely alter fluid balance in the pediatric patient (see Chapter 43). Even when chemotherapy administration is preceded by antiemetic therapy, nausea and vomiting may still occur. Some patients receiving cisplatin or carboplatin experience delayed nausea and vomiting several days after the drugs are administered. While chemotherapy agents or IV hydration is infusing, the nurse must monitor intake and output closely and note any discrepancy that would indicate dehydration or overhydration. Patients receiving radiation therapy to the chest, abdomen, pelvis, or craniospinal axis may experience nausea, vomiting, anorexia, and diarrhea. Antiemetic or antispasmodic therapy may be indicated for these patients to provide symptomatic relief (see Chapter 43). Certain patients who suffer from anticipatory or treatment-associated nausea and vomiting may benefit from relaxation techniques or guided imagery. Nurses can educate the patient and family regarding these nonpharmacologic methods.
Gastrointestinal cell damage from chemotherapy or radiation can cause ulcerations in the mucosal surface of the alimentary canal.36,37 This side effect is extremely painful. Ulcers occurring in the oral cavity are referred to as stomatitis and appear as edematous, erythematous, eroded lesions. These lesions may extend down into the esophagus. Anorexia commonly occurs, because eating and drinking cause extreme pain.
It is important for the child to be examined by a dentist prior to receiving chemotherapy likely to produce mucositis or radiation to the head and neck. Removal of plaque and treatment of existing dental caries is essential in preventing systemic infection once myelosuppression occurs.38,39 Meticulous oral hygiene assists in preventing or lessening the deleterious effects of mucositis. In infants and small children, gingival care is achieved by wrapping a gauze pad around a finger, soaking the gauze pad in saline solution, and swabbing the patient’s gums, palate, and buccal mucosa. This should be done after eating or drinking, or as often as every 2 hours. Older children can cleanse their own teeth and gums with a soft toothbrush and use a saline-based oral solution to rinse the mouth. Because orthodontic appliances may harbor debris and cause infection, they may need to be removed during chemotherapy. Nursing management of the child with mucositis involves implementing an oral hygiene regimen, monitoring hydration, and encouraging the child to choose foods that are best tolerated.
Prevention of infection and treatment of pain are the main objectives in treating oral mucositis. Various oral care measures, including pharmacologic management of mucositis, are summarized in Table 44.2. Daily oral care, antiseptics, topical anesthetics, coating agents, lubricants, mechanical debridement, and miscellaneous agents are used. Fluid intake can be facilitated by the use of a straw to bypass tender oral mucosa. Anorexia is expected in these children, and as the ulcerations heal they will start to eat and drink normally. Subsequent chemotherapy regimens may require dose modification to prevent similar episodes.39
Fatigue in Children with Cancer
Since 1998, numerous research publications evaluating fatigue in children with cancer have been published, the majority of which have been published in nursing journals. This symptom has been evaluated from both qualitative and quantitative research perspectives. The qualitative findings indicate that fatigue is defined differently by children, adolescents, and their parents40,41,42 and that different types of fatigue exist in pediatric oncology patients.43 Newly developed fatigue measurement instruments have been tested during the past 5 years.41,44 Further research is needed regarding fatigue as a single symptom and also in relation to other symptoms. Fatigue has been described as one of the most distressing symptoms experienced during childhood cancer treatment, but further research is needed to determine how the intensity and presence of fatigue change over the course of treatment. The prevalence of this symptom confirms the need to explore the interrelationships between fatigue and other symptoms commonly experienced by children with cancer, as treating one symptom may diminish the presence or intensity of other related symptoms. In addition, certain types of interventions are now being tested to decrease fatigue during treatment. These include pharmacologic measures, physical activity, and distraction techniques. More research into matching the type of fatigue and intervention is needed.
Pain Management
One of the most important roles of the nurse is the assessment and management of pain in children with cancer (see also Chapter 43).

Supportive care for children in pain starts with a developmentally appropriate assessment to establish effective pain interventions. Interventions designed to decrease pain in children should include nonpharmacologic strategies as well as medications, when possible.
Category Agents Action Comments
Rinses Saline rinse (salt in warm water to taste) Removes particulate matter from teeth, tongue and gingival tissue Safe, effective, economical
Sodium bicarbonate rinse (1 teaspoon baking soda to 1 pint water)    
Antiseptics Chlorhexidine gluconate 12% (Peridex)
Hexylresorcinol 0.1%, glycerin 28.2%, sodium bisulfate (ST-37)
Antibacterial activity Chlorhexidine may stain teeth
Generally well tolerated
Topical anesthetics Maalox plus diphenhydramine
Viscous lidocaine (Xylocaine) 2%
Antacids reduce acidity, diphenhydramine has a mild anesthetic effect
Anesthetic effect
Give 15–20 min before meals; effect brief
Limit use if swallowing to prevent systemic toxicity. Numbness may increase danger of oral trauma or aspiration
Coating agents Orabase (with or without benzocaine) Provides protective barrier Odorless and tasteless
Sucralfate suspension Cryoprotectant Soothes inflamed tissue
Lubricants Xero-Lube (artificial salve) Provides moisture Tasteless; thick consistency
Other topical agents Vitamin E
Tretinoin (vitamin A derivative)
Stimulates wound healing
Tasteless; sticky consistency
Mild odor; tasteless
Mechanical debridement Soft-bristle toothbrush
Foam swabs (toothettes)
Removes debris Use gently if neutropenic or thrombocytopenic
Also useful for application of topical medications
aSee text for details.
Common Myths about Children in Pain
Myths and misconceptions about the child’s ability to perceive pain interfere with accurate assessment and treatment of pain. Some of these are as follows45,46,47: (a) a child’s ability to feel pain is inhibited because children have an immature nervous system; (b) a child cannot communicate the location and intensity of pain; (c) children do not remember painful events; (d) it is always possible to determine whether a child is faking pain or is truly suffering from pain; (e) pain must have an evident stimulus, and if one is not noted, then the child cannot be feeling pain; (f) a child reports pain to the nurse or doctor; and (g) if the child does not complain of pain, then the child is not suffering from pain.
If any member of the healthcare team believes any of the foregoing myths regarding a child’s ability to perceive pain, pain management will be inadequate. The entire assessment and intervention process will be impaired. Pain management in children has always been suboptimal,46,48 and if this situation is to be remedied, each healthcare professional needs to be aware of and dispel these myths.
Developmental Considerations
Children’s perceptions of pain are influenced by the child’s stage of cognitive development, cultural environment, and parent-child relationships.49,50,51 These influences are important to consider when assessing the child’s pain as well as when developing appropriate management strategies. Another important consideration is that the child with a chronic illness such as cancer may be more medically sophisticated than other children the same age. Children with cancer are often advanced in their knowledge of medical treatment and are acutely aware of its effects. However, they may not be cognitively able to comprehend the meaning of the treatment and its importance to survival. This discrepancy can create confusion for the health provider caring for the 4-year-old patient who can explain the technical details of bone marrow aspiration, yet is combative and uncontrollable during the procedure.
Children develop their understanding of pain similar to Piaget’s52 conceptualization of cognitive development, recognizing the considerable overlap in these categories (Table 44.3). Younger children who are generally in the preoperational stage of development communicate their perceptions of pain much differently from older children who are capable of abstract thought. The toddler or preschool child often perceives that he or she has done something wrong to cause the pain and does not understand why treatment or a procedure is necessary. Children this age cannot comprehend that painful treatment is sometimes necessary to prevent the disease from recurring. For this reason, the young toddler, unable to understand the purpose of a bone marrow aspiration, should have the procedure completed as quickly and painlessly as possible. In very young children, or children with developmental delay, the use of pharmacologic interventions

is more appropriate and effective than trying to explain the importance of the procedure.53,54,55
Age (yr) State of Cognitive Development Patient Perception of Pain
2–7 Preoperational May have done something “wrong” or “bad” and is now being punished; no difference between disease-related pain and treatment-related pain
7–11 Concrete operational Fears pain may lead to death; past experiences influence the present situation; treatment and side effects are “worse” than the disease.
11+ Formal operational Understands the cause of pain; realizes the difference between disease-related pain and treatment-related pain
Children between the ages of 7 and 11 years begin to develop concrete thinking skills and are able to understand situations that infants, toddlers, and preschool children are generally unable to comprehend. During this stage, however, children have vivid imaginations and often fear that pain may lead to death. Preparation of the school-aged child before the procedure is essential to assist in alleviating unfounded fears and anxiety. Past experiences often play a major role in how the 6- to 12-year-old child perceives pain caused by cancer or required treatment. For example, a difficult procedure performed by an unskilled healthcare professional can cause the child to fear the procedure and to become uncooperative during future attempts. Every effort should be made to prevent experiences that unnecessarily increase the child’s pain and discomfort.
Children older than 12 years generally begin to develop the capabilities for formal operational thought.52 They are able to understand the differences between disease-related pain and the side effects of treatment. During this stage of development, adolescents may express their reaction to pain by withdrawing from others or by becoming depressed. Open, honest discussions between the healthcare provider and the adolescent regarding the disease and its treatment may assist the patient in coping with the associated discomfort. These dialogues allow for the development of effective coping skills.
The influence of the child’s cultural environment should not be overlooked. Cultural beliefs can play a major role in the family and child’s perception of cancer and its treatment. Cultural beliefs regarding pain and suffering in children should be considered when implementing intervention strategies for the child. Family assessment should include specific questions regarding the meaning of the illness and perceptions of treatment. Accurate family assessment can provide helpful information when establishing interventions for the child in pain.
Parent-child relationships directly influence the child’s perception of pain, regardless of the age of the child. Parents who are distraught and are unable to control their fears and concerns often are a detriment to the child’s ability to cope with the painful effects of the disease and treatment. Early intervention with parents is essential in developing effective coping skills. Parental support positively influences the child’s ability to adjust to painful experiences.
Assessment of Pain in Children
To achieve effective pain management, pain intensity and relief obtained from interventions must be assessed at regular intervals. Because children cannot, or do not, report pain consistently to healthcare providers, the nurse must carry a high index of suspicion regarding the presence of pain. Pain assessment in infants and children is not necessarily straightforward. Chronologic and developmental ages influence the accurate assessment of pain. In infants, properties of their cry, facial movements, and body posturing all give clues to the presence of pain. Whereas a shrill, uncontrollable cry, contortion of facial features, restlessness, and arching of the back are indicators of pain, a silent, lethargic, submissive infant or child may also be in pain. The goal is to prevent pain from becoming severe by initiating early intervention, rather than facing the difficult task of treating established pain.
Early intervention is possible only if a thorough patient assessment is obtained. As mentioned previously, signs of pain may not be readily apparent. The nurse must use age-appropriate assessment techniques or instruments. Physiologic responses to pain are manifested by tachycardia, tachypnea, hyperventilation, hypertension, diaphoresis, and nausea and vomiting. These responses are all measurable. Self-report instruments are appropriate for use in children 4 years of age and older. These tools are in the form of graphic rating scales, visual analog scales, numeric scales, and color scales.1 The use of instruments is necessary for obtaining a baseline and for periodic reassessment of pain intensity. It is important to use pain-rating instruments that have been tested for reliability and validity. If the child is unable to report pain, the parent should be asked to assist in determining the presence or severity of pain by evaluating changes in behavior (e.g., eating less, playing less, crying more, sleeping more). Once a plan of pain assessment has been established, the same methods should be used consistently. Physiologic indicators, behavioral responses, and self-report instruments should be used for reassessment at least every 2 hours after instituting interventions for pain management.1
Procedure-Related Pain
Invasive procedures are the most painful and traumatic events experienced by children receiving treatment for cancer.56,57,58,59,60 Aggressive treatments such as high-dose chemotherapy for cancer are also major sources of pain and discomfort for children. Although procedure-related pain represents an acute, brief experience, it is accompanied by fear and anxiety. Bone marrow aspirations and lumbar punctures are perceived as extremely painful by children with cancer.61,62 Previous studies have shown that children do not adapt to the discomfort associated with invasive procedures, and they experience greater levels of anxiety with repeated painful experiences.

Children often experience symptoms such as depression, insomnia, and anorexia before the clinic or hospital visit when such procedures are scheduled.
Researchers continue to build on the knowledge of how best to prepare children for invasive procedures. Comparison of the benefits of procedural sedation to general anesthesia continues in the recent research literature. These studies support general anesthesia as a safe, effective procedural intervention and also recommend procedural sedation for many patients and families because it saves time and medical resources.61,62,63,64 Recent studies identify factors that influence the child and adolescent’s pain perception during invasive procedures. Positive mood53 and the child’s memories of past procedures65 were associated with patient reports of pain and distress. Teaching parents and children cognitive behavioral interventions (i.e., distraction, relaxation, art therapy) for support during invasive procedures continues to be effective in decreasing pain and distress. Consensus among professionals caring for children with cancer supports a developmental approach to managing pain associated with invasive procedures. The Consensus Conference on the Management of Pain in Childhood Cancer, and the Agency for Health Care Policy and Research have established specific principles for management of procedure-related pain.66,67 Recently, these principles have been reinforced by the American Academy of Pediatrics and the American Pain Society.47
  • The child and parents must be prepared, with specific methods indicated for the parent to help the child relax.
  • The child must be evaluated to assess effectiveness of treatment in reducing pain and anxiety.
  • As pleasant an environment as possible should be created in the treatment room.
  • The treatment approach should be mulitmodal and meet the child’s needs.
  • Treatment of pain and anxiety should be maximal for the initial procedure, to reduce the development of subsequent anticipatory anxiety symptoms.
  • Local anesthetics should be considered even for simple procedures.
  • Staff responsible for procedures must be knowledgeable about behavioral and pharmacologic treatment of acute pain and anxiety.
  • Appropriate monitoring and resuscitative equipment must be readily available.
  • Staff must demonstrate competence in performing invasive procedures.
Pharmacologic management of procedural pain should include analgesic and sedative agents. Procedural sedation is used at many institutions and is defined as a minimally depressed level of consciousness that retains the patient’s ability to maintain a patent airway independently and continuously, and respond appropriately to physical stimulation and/or verbal command.68,69 Various pharmacologic approaches are used, most of which combine an opioid analgesic with a benzodiazepine for anxiolysis and sedation. Table 44.4 describes specific nursing responsibilities related to sedation of patients for invasive procedures.
Topical anesthetics are used extensively in the management of procedure-related pain.70 EMLA cream and LMX cream are topical anesthetic preparations that penetrate intact skin. The depth of anesthesia obtained from using the topical anesthetic is approximately 5 mm, and the duration of action is 4 hours. A thick layer of the topical anesthetic (about 2 mm) is significantly more effective than thinner layers. The anesthetic effects of the cream depend on thorough hydration of the skin; the skin should be covered with an occlusive dressing after application and left undisturbed for at least 1 hour.71 A decreased effectiveness has been observed in African-American patients; this is thought to be due to the presence of a thicker stratum corneum.72 Studies have shown that use of EMLA cream can reduce pain experienced by children undergoing venipuncture, injections through implantable catheters, and lumbar puncture.70,71,72,73,74,75,76 For more invasive procedures such as bone marrow aspiration or lumbar puncture, the most complete anesthesia occurs 90 to 120 minutes after application of the EMLA cream or within 30 minutes of LMX cream. Patients who are seen in the outpatient setting can have their cream applied at home to prevent delays in the clinic.
A traumatic experience during a child’s first invasive procedure may affect the child’s ability to cope with future procedures.47,66 Parental participation is helpful to the child, particularly for toddlers and preschool children, in whom separation issues are paramount. Parents who are present during invasive procedures should receive specific information beforehand as to what will take place and suggestions as to what they can do to help their child during the procedure. Involving the parents during a procedure provides a source of support for the child. During minor procedures, such as venipuncture or IV access, the parent can hold and hug the child while assisting in isolating and restraining a limb or body part. During more extensive procedures (e.g., bone marrow aspiration, lumbar puncture) the parent can be positioned close to the child, within the child’s view, to talk with and soothe the child. Parents who are uncomfortable in this role and who prefer not to accompany the child into the procedure room should be reassured that the child will be well treated. Another adult can assume the role of the parent in this situation.
Tactile stimulation and relaxation techniques are behavioral methods that can be used to diminish procedure-related pain as well as acute pain. An infant can be provided with a pacifier or sucrose nipple to suck during episodes of pain. Relaxation techniques reduce muscle tension, which often accompanies pain. Infants can be swaddled in a warm blanket, held securely, and rocked. Toddlers and preschool children may also benefit from being held and rocked. Older children can be instructed in relaxation techniques such as closing their eyes and deep breathing. Practicing these methods along with them reinforces these techniques.
Medical play is an innovative method used to instruct and educate the child regarding diagnostic tests and procedures. As the procedure is explained, the child has the opportunity to ask questions and to examine equipment. The child is encouraged to perform the procedure on a doll. Anxiety related to the procedure is relieved as the child gains understanding of the procedure and the sensations they will experience.
Distraction and guided imagery are two cognitive methods of nonpharmacologic pain management. Distraction involves concentrating on an event or object other than the

pain. Infants and toddlers are easily distracted because of their short attention span. Older children can be distracted with activities such as video games, television, and music. Guided imagery works well with school-aged and older children who can visualize an enjoyable experience or pleasant memory. The child describes the event in detail as he or she visualizes it. The effectiveness of this method may be enhanced by the use of a coach. The coach may be a parent or other adult who discusses the event with the child and who keeps the image alive. Physical tactics may also be employed as nonpharmacologic methods of pain management. Many times, these are useful in older children who do not require pharmacologic management for minor procedures or discomfort. These methods include application of heat or cold, immobilization of the affected limb or body part, or massage therapy.
Before Procedure During Procedure After Procedure Until Recovery
Ensure that appropriate monitoring and resuscitation equipment is available and functioning in both procedure and recovery room. Maintain physical and verbal contact with the child. Position child to maintain airway patency and prevent aspiration.
Continuously assess for airway patency and monitor pulse oximeter. Continuously monitor child’s status with pulse oximeter.
Assess skin color, nail beds, mucosa at 2- to 3-min intervals.
Ensure that emergency cart is in close proximity. Assess child’s color (skin, nail beds, lips, mucosa) at 1- to 2-min intervals. Asses heart rate, respiratory rate, responsiveness at 5-min intervals until child is alert and cardiovascular, respiratory rate, and responsiveness have returned to pre-sedation status.
Obtain and document child’s vital signs (including height and weight). Assess heart rate, respiratory rate, responsiveness at 2- to 3-min intervals. Evaluate efficacy of treatment plan for pain, anxiety in conjunction with child, parent, and other caregivers; plan individualized treatment approach for future procedures.
Obtain child’s current health history (including allergies and current medications). Initiate appropriate behavioral interventions for child and parent. Instruct child and parent concerning follow-up care and future treatment plan.
Assess child’s current health status (including responsiveness, skin and nail bed color). Document child’s tolerance of procedure, vital signs, and pulse oximeter reading. Document vital signs, color, responsiveness, general health status, efficacy of treatment plan, future treatment plan, and plan for follow-up care in medical record.
Review sedation order (including drug, dosage, route, in relation to child’s current health status).  
Assess child’s and parent’s psychological preparation, knowledge, and coping skills related to procedure.
Initiate behavior interventions appropriate to age and health status.
Apply pulse oximeter.
Administer sedation as ordered.
Document medication administration, including child’s tolerance.
Disease-Related and Treatment-Related Pain
Nurses must be knowledgeable about the basic pathophysiology of cancer pain and treatment-related side effects. The World Health Organization’s three-step analgesic pain ladder should be incorporated into the approach to pain management for every child with cancer.77 Nurses must acquire extensive knowledge of common analgesics and narcotics used in pediatric pain management. Interdisciplinary pain management teams are used in numerous pediatric cancer centers. These teams serve as consultants and provide expertise in the assessment and management of pain. The nurse often serves as the coordinator of care, playing a key role in cancer pain management.
Pharmacologic management of disease-related pain involves various methods, discussed in detail in Chapter 43. More than a trial of one type of medication may be necessary to find the appropriate agent to manage a patient’s pain. The route of administration must be considered as well. Providing pain relief by administering deep intramuscular injections, as an alternative to the IV, is not appropriate therapy, because many oral preparations are now available with comparable efficacy. Nonsteroidal antiinflammatory drugs (NSAIDs), acetaminophen with codeine, and morphine are commonly used in the management of disease-related pain.47,66 All are available in the oral form, and NSAIDs and morphine are available as IV preparations. Appropriate dosing is imperative. Doses should be titrated to increase the amount of analgesia and to minimize side effects.
Central Line Care
Patients on prolonged or intensive treatment regimens will require a CVAD. The reasons are varied but may include

administration of blood products and IV fluids, chemotherapy, parenteral nutrition, peripheral blood stem cell (PBSC) harvest and PBSC or bone marrow reinfusion, antibiotics, and repeated blood specimens. Several types of CVADs are available and are classified as external catheters such as the Hickman and Broviac, or indwelling Silastic catheters such as the Infusaport or Portacath. Chapter 12 discusses these catheters in detail. Groshong catheters are used at some institutions and do not require the instillation of heparin to maintain patency.
Nurses caring for children with venous access devices must be aware of the complications related to indwelling catheters. These include infection, bleeding, thrombus formation, and catheter damage.78,79 Patient and parent education regarding the care of external catheters should be based on institutional guidelines. Instruction must include a detailed discussion of sterile technique, flushing with saline and heparin when appropriate, and dressing changes. Good handwashing is imperative in preventing infection in patients with central lines.79
Standard guidelines to determine when removal of the catheter is necessary include positive blood cultures beyond 72 hours of antimicrobial therapy based on susceptibility testing or evidence of a tunnel infection, catheter occlusion unresponsive to thrombolytic or chemical treatments, and a suspected or documented catheter-related infection causing septic shock.78,80,81 When antibiotics are administered to patients with double-lumen or triple-lumen catheters, the doses must be rotated to each of the ports and lumina, to avoid persistent bacterial colonization of an untreated lumen. When infections are treated and the CVAD is not removed, the length of therapy depends on the duration of bacteremia or fungemia and the immunologic status of the patient. Parenteral antibiotic therapy usually continues 7 to 10 days after the first negative blood culture is obtained in the immunocompetent patient and 10 to 14 days in the patient who is immunocompromised.82
Chemotherapy Administration
An understanding of the actions and side effects of chemotherapeutic agents is essential for nurses caring for children with cancer (see Chapter 10). Most institutions require nurses to complete a chemotherapy certification course before administering these drugs. Chemotherapy courses for nurses should include an overview of the principles of chemotherapy, classification and actions of specific agents, side effects, special considerations (e.g., interactions with other drugs), proper administration and handling, disposal of materials, and precautions to be taken with vesicants (Table 44.5). Nurses should be observed administering chemotherapy and should demonstrate competence before completion of the certification course. Specific guidelines for safe practice in the administration of chemotherapy have now been established and are described in Table 44.6.83
Chemotherapeutic agents must be given through a free-flowing IV line. The infusion should be stopped immediately if any sign of infiltration occurs (i.e., pain, stinging, erythema, swelling). Agents such as vincristine, vinblastine, mitomycin-C, and doxorubicin pose significant clinical problems when they become extravasated into subcutaneous tissue.84
If extravasation occurs, the chemotherapy infusion should be immediately discontinued, and aspiration of any residual drug and blood should be attempted from the tubing, needle, and site. If the nurse is not able to aspirate the drug in the tubing, the needle or catheter should be removed. Direct pressure to the extravasation site should be avoided. Specific antidotes for chemotherapeutic agents are recommended and are found in Table 44.7. When an antidote is available, it should be instilled through the catheter. If the catheter has been removed, the nurse should inject the antidote into the subcutaneous tissue at the location of the extravasation using a 25-gauge needle. Warm or cold compresses discussed for use in the extravasation of specific agents (Table 44.7) should be used for 20-minute intervals four times a day for 24 hours.85

The affected arm should be elevated if possible for 48 hours. The site should be observed for induration, pain, erythema, swelling, blistering, and necrosis.
Before administering chemotherapy or biotherapy, the nurse should be able to do the following:
Demonstrate familiarity with cancer chemotherapeutic or biotherapeutic agents (pharmacokinetics, dosage, interactions, stability, administration, side effects, toxicities, and latent effects).
Interpret laboratory values that determine need for delay in treatment administration or dose adjustment.
Plan for the management of treatment side effects.
Plan for potential extravasation (chemotherapy) or anaphylaxis (chemotherapy and biotherapy).
Initiate procedure for nursing interventions in emergency situations.
Verify the appropriateness of the drug dosage ordered by the physician by verifying the dosage with the protocol and confirming it with a second person.
Educate patients and families about the treatment.
When applying knowledge in a clinical setting, the nurse should be able to do the following:
Select an appropriate site for therapy; when administering vesicant chemotherapy peripherally, select an appropriate vein, perform the venipuncture, and anchor the needle safely.
Administer the chemotherapy and biotherapy safely according to the facility’s procedure.
Document chemotherapy or biotherapy administration and patient’s reaction to treatment.
Dispose of all materials and unused chemotherapeutic or biotherapeutic agents safely.
Use care and strict aseptic technique in handling chemotherapeutic agents to prevent any physical contact with the substance.
Prepare drugs in a properly ventilated room or biologic safety cabinet (incorporates protective front panel and vertical laminar airflow to reduce potential for inhalation during preparation).
Wear disposable gloves and protective clothing and discard in special container after each use.
Use a sterile gauze pad when priming intravenous tubing, connecting and disconnecting tubing, inserting syringes into vials, breaking glass ampules, or any other procedure in which antineoplastic drugs may be inadvertently discharged.
Dispose of all contaminated needles, syringes, intravenous tubing, and other contaminated equipment in a leak-proof and puncture-resistant container; do not recap or break needles.
Planning for Care at Home
Planning for discharge to home should begin when the child is admitted to the hospital. The nurse must be familiar with resources available to assist the patient’s family members in meeting their needs after hospital discharge. Coordination of care between the hospital and home is essential. Many families require home care services provided by public agencies, hospitals, or organized home care agencies. Home care nurses are generalists who provide advanced technical skills and supportive nursing care for many different pediatric problems. Children with cancer may require hyperalimentation, IV antibiotic therapy, chemotherapy, central line care, pain management, and psychosocial support. Coordination of care in the home requires that the pediatric oncology team and the home care agency work together to develop and implement a plan of care.
The pediatric oncology nurse initiates the first contact with the home care nurse and provides a detailed overview of the child’ diagnosis, treatment plan, and specific needs in the home setting. Answers to specific questions about the ability of the home care agency to care for children with cancer adequately should be obtained (Table 44.8). After the initial contact, a nurse from the home care agency may visit the child and family in the hospital and meet with the pediatric oncology team to determine specific interventions.
Providing Information on the Disease and Treatment
The pediatric oncology nurse works with other members of the interdisciplinary team to provide education for the family and patient regarding the diagnosis, treatment, and psychosocial issues of childhood cancer. At the initial diagnostic talk, the nurse should be present. During subsequent discussions, the nurse reinforces and reviews information and answers the questions and concerns of the patients and family. Most pediatric cancer centers have structured education programs for families that include written materials, handbooks

for parents, formal teaching sessions, videotapes, tours of the hospital and clinic, and structured play activities for the child to learn more about the illness and treatment. Parent and patient education is ongoing and continues throughout treatment and after completion of therapy.
Category of Agent Treatment Antidote Preparation Local Care
Alkylating agent Isotonic sodium thiosulfate Mix 4 mL of 10% sodium thiosulfate USP with 6 mL sterile water for injection; administer 2 mL into site for each milligram of drug extravasated Application of heat and cold not proven effective
   Mechlorethamine (nitrogen mustard)  
Antitumor antibiotic 50% DMSO Apply 1.5 mL topically to site q6h for 14 d; allow to air dry Application of heat and cold not proven effective
   Mitomycin C  
DNA intercalating agent 50% DMSO Apply 1.5 mL topically to the site q6h for 14 d; allow to air dry Apply cold pack immediately without pressure for q6h for first 24–48 h after injury
Plant alkaloids None available Elevate extremity and apply a warm (not hot) pack for 15–20 min q6h for 24–48 h after injury
DMSO, dimethyl sulfoxide.
Does the agency employ nurses with pediatric experience? If so, how many nurses?
Do the nurses have experience with cancer patients?
Are the nurses certified or competent in chemotherapy administration?
Do the nurses have experience with long-term venous access devices (e.g., Broviac, Hickman)?
Can blood product transfusion be administered in the home?
Are the nurses familiar with side effects of cancer therapy?
Are appropriate precautions followed to minimize exposure to infectious organisms?
What kind of coverage is provided (i.e., 24 h)?
Educational programs for families and patients should include discussion of the pathophysiology of the different types of cancer, various treatment options, general side effects of treatment, growth and development concerns, and family issues. Parents must become familiar with the special needs of their child. Psychomotor skills such as central line care and subcutaneous injections may need to be acquired by the parents and child and are taught by the nurse before hospital discharge.1 Assessment and evaluation of specific teaching given to families and patients should be documented in the patient’s record. The nurse should be aware of the numerous educational resources that exist for children and families with cancer. Organizations that provide these materials are found in Chapter 57.
Nurses caring for children with cancer must understand that patient education must relate to the child’s developmental stage. Knowledge of growth and development helps the nurse to communicate with the child before painful procedures or unfamiliar tests and to understand the child’s uncertainty about hospitalization. For example, when dealing with a preschool child, it may be more appropriate to use medical play to demonstrate how a bone marrow aspiration is performed. In comparison, the adolescent needs a detailed discussion of the procedure, a description of the experience, and instructions about what to do. Chapter 46 describes specific considerations when discussing the disease and treatment with children at various ages.
Facilitating Psychosocial Support
Nurses work with the interdisciplinary care team to provide psychosocial support for the patient and family. The nurse must understand family systems and the role each member plays in the family. The expert nurse considers cultural influences on the child and family and conducts a detailed assessment of the family’s support system including their strengths and weaknesses. Evaluation of community resources is an integral part of the family assessment.
Diagnosis, treatment, discontinuation of therapy, relapse, and terminal illness are crisis points for families who have a child with cancer.86 At the time of diagnosis, anxiety, fear, anger, and depression are commonly felt by family members. Coping with the crisis of childhood cancer requires that the family develop new attitudes, behaviors, and coping techniques. Nurses provide support by helping family members work together. During the treatment period, nurses are resources for the family, teaching them about the disease and treatment and providing support during stressful situations. Nurses play a major role in preventing parental overprotection and isolation of the child. Families must be reassured that maintaining discipline during treatment is in the best interest of the child. Many children who are diagnosed with cancer are successfully treated and go on to lead normal adult lives. Maintaining discipline during childhood enables them to become well-adjusted adults. Essential coping tasks for the family during the diagnostic period and initiation of treatment are described in Table 44.9.
Over time, the family ideally learns to adjust to the changes brought on by treatment of childhood cancer. Cessation of therapy can bring with it new fears for the child and family. Preparation for discontinuation of therapy is as essential as the education provided at the time of initial diagnosis. Nurses must encourage the parents to verbalize their fears. Table 44.10 identifies specific interventions for families at the time of discontinuation of therapy.
Recurrent disease brings with it a crisis for the entire family. Adequate time must be spent in counseling and providing support during the period when families must face the failure of treatment. Parents frequently feel guilty, and they may be angry. Parents may question why the disease has recurred despite all they have done. Nurses caring for children and families experiencing a relapse must be excellent listeners and must create a caring atmosphere amid the turmoil. Table 44.11 reviews specific nursing interventions for families during this time.
At the time of the initial cancer diagnosis, families with a child who has cancer are confronted with the possibility of death. Return of the disease brings with it the realization that the child may not survive. Parents facing the loss of a child to cancer have been through numerous crises since diagnosis but none so difficult as the awareness that their child may die. Nurses can assist the family during this crisis by helping to identify strengths that will support them throughout this difficult time. Nursing interventions that promote effective coping tasks include helping the family accept the terminal status of their child’s disease, allowing the family to participate in the child’s care as much as possible, including hospice support (see Chapter 46), encouraging expression of emotions and guilt feelings, and planning for the future (Table 44.12).
Promoting Normal Growth and Development
Cancer therapy has the potential to cause significant developmental and growth delays.87 The nurse must continually assess the child’s growth and development during treatment and after cessation of therapy. Evaluation of the child’s weight and height should be documented on standardized growth charts at regular intervals. Children younger than 3 years should have head circumferences documented. Changes in weight or lack of expected growth in height or weight should

be followed closely. Any percentile change on the growth chart, or weight loss of 5% or more, should be evaluated. Specific nutritional interventions described in Chapter 42 should be started immediately once changes in weight occur.
Essential Coping Tasks Interventions
Gaining control of emotions Allow time for parents to be alone to grieve.
Alleviating acute anxiety Maintain hope for the child no matter how serious the situation.
Allow the family to express their feelings and fears.
Understanding the diagnosis Spend time discussing the diagnosis and its meaning before presenting a plan for treatment.
Explaining cancer to the child Use terms the child can understand; tell the child about cancer and the need for treatment.
Establishing the treatment regimen Begin discussions with parents and the child about the treatment regimen and side effects.
Preventing anxiety regarding discharge and home care Begin early to discuss care for the child at home.
Identify key individuals who will assist the family at home.
Allowing for participation of family members Discuss with siblings and other family members the child’s diagnosis and treatment.
Encourage siblings to visit the child.
Accepting the diagnosis Allow for ongoing discussion of the diagnosis with parents and family members.
Reinforce with parents that it is normal to have continued fears and doubts.
Understanding treatment and its side effects Throughout the treatment, continue discussions of treatment and its side effects to increase family’s understanding.
Identifying support systems Assist the family in identifying individuals and groups who will support the family during times of crisis.
Establishing alternative routines, lifestyle Provide opportunities for the family to begin reestablishing their lifestyle to meet each family member’s needs.
Encourage activities the family participated in before diagnosis.
Stress importance of child’s return to school.
Providing support for the child Allow the child to express his or her own thoughts and feelings, separate from the parents.
Provide opportunities for age-appropriate play therapy, especially for invasive procedures.
Provide the child with explanations for body changes occurring from the disease or treatment.
Allow the child to participate in care actively.
Encouraging siblings’ participation Stress importance of including siblings in conversations and care.
Allow siblings to accompany the child to the hospital when possible.
Stress that parents need to provide time alone with other siblings at home.
Adapted from Hockenberry MJ, Coody DK. Pediatric oncology and hematology: perspectives on care. St. Louis: Mosby, 1986.
Nurses can facilitate normal development by ensuring that the child is treated at an age-appropriate level when visiting the clinic or hospital. The importance of meeting basic needs and supporting developmental tasks should be emphasized at each visit. Family support should be given to encourage normal childhood development at home. Table 44.13 describes specific nursing interventions designed to promote developmental tasks for children with cancer. Accurate assessment

of any disruption in growth or development allows for early intervention.
Essential Coping Tasks Interventions
Adapting to discontinuing treatment Begin discussions several months before therapy is discontinued.
Allow time for parents and child to ask questions and verbalize concerns.
Recognizing fear of relapse Discuss openly the possibility of relapse.
Review concerns for parents and child regarding what to expect if relapse should occur.
Realizing impact of parent’s attitude Discuss importance of parents’ attitude and how it affects the child.
Stress importance of verbalizing fears while recognizing the positive situation of discontinuing therapy.
Supporting child’s needs and preventing fears Reassure the child that therapy would not be discontinued unless he or she was doing well.
Allow the child to express fears separately from parents (provide support and stress need for courage and trust).
Adapted from Hockenberry MJ, Coody DK. Pediatric oncology and hematology: perspectives on care. St. Louis: Mosby, 1986.
Essential Coping Tasks Interventions
Alleviating initial shock of relapse Allow parents to express shock and disbelief.
Provide time for grieving before initiating discussion of treatment plan.
Understanding the impact of relapse Discuss the seriousness of relapse, yet provide hope in the situation.
Offer facts regarding possible outcome of the disease.
Discussing relapse with the child Express importance of being truthful with the child.
Discuss the relapse with the child and the need to begin therapy again (realize the child will perceive the seriousness of the situation by observing parents and staff).
Expressing appropriate feelings of grief Encourage expression of feelings and need for family to maintain a realistic outlook toward the situation.
Identify key support individuals to maintain close follow-up with all family members.
Adapted from Hockenberry MJ, Coody DK. Pediatric oncology and hematology: perspectives on care. St. Louis: Mosby, 1986.
Returning to school is an important milestone for children with cancer. Every attempt must be made to ensure that the child has the opportunity to return to the classroom, despite the disease and treatment. Chapter 50 discusses the importance of school reentry programs for children with cancer. Nurses are instrumental in assisting with the child’s return to school.86,88 Visits to the school by the nurse, to meet with teachers and to talk to the child’s peers, are commonly offered by most comprehensive childhood cancer centers. At times, a child with cancer must refrain from returning to school, often because of the intensity of the treatment program. When a child must have homebound instruction before returning to the classroom, ongoing communication between the child and classmates should be encouraged. Successful school reentry is a goal for all children and must be perceived as such by all members of the patient’s care team. The nurse must be vigilant in attempting to help the child return to school when at all possible.
Following up Long-Term Survivors
Nurses who provide care for survivors of childhood cancer must understand the late effects of therapy and should have an extensive knowledge of normal growth and development. Current collaborative practice models designed to follow these patients include nurses as direct care providers. These models provide a more comprehensive approach to meeting the complex needs of children and adolescents who have survived cancer. Nurses, usually in advanced practice roles, are able to perform physical assessment, to provide growth and development evaluation, and to conduct screening tests for specific late effects related to the type of cancer or its treatment.89,90 A major aspect of the nursing role is patient and family education regarding possible late psychological or

physical consequences of childhood cancer. Chapter 49 discusses specific late effects in detail.
Essential Coping Tasks Interventions
Accepting the child’s impending death Allow the parents to verbalize their fears of the child’s death.
Discuss any questions they may have to decrease their worries and concerns.
When possible, listen to the parent’s wishes and demands.
Participating in the child’s care Encourage the family to remain involved with the child’s care. (This involvement allows them to comfort the child while giving the parents a sense of belonging and need; it will also assist in preparing them for the inevitable loss.)
Expressing appropriate emotions Stress the importance of expressing grief.
Identify key individuals who will provide comfort and reassurance.
Encourage relatives and significant others to be involved to give parents an opportunity to rest and maintain physical strength.
Resolving guilt feelings and sense of helplessness Reassure parents that they could have done nothing to prevent the child’s death.
Assure them that they are doing everything possible by providing comfort and support.
Stress that the most important role is their presence with the child.
Planning for the future Stress the need for the family to look toward the future.
Adapted from Hockenberry MJ, Coody DK. Pediatric oncology and hematology: perspectives on care. St. Louis: Mosby, 1986.
Age Basic Needs Developmental Tasks
Infant Nurturance Allow for mother to hold infant as much as possible; encourage touch; provide time alone.
Physical comfort Keep as warm as possible; infants derive much comfort from mouth, skin, and sensory modalities.
Security Allow parents to remain with infant; perform procedures and examinations as quickly as possible to decrease time of stress.
Stimulation Provide appropriate mechanisms for stimulation; visual and auditory arousal is essential, even for the critically ill child.
Food Promote intake as much as possible; allow for sucking; strive to minimize events altering the infant’s ability to tolerate intake.
Toddler Beginning psychological awareness Promote pursuance of bowel and bladder training; allow for essential stimulation of motor skills such as walking, talking, fine motor skills.
Autonomy Encourage independence; assure parents of toddler’s need to participate in activities such as care; discourage regressing by setting limits early in the illness.
Socialization Continue relationships with other children; promote activities; strive to develop toddler’s trust by interacting on a level he or she can comprehend.
Beginning self awareness Stress importance of talking to the child and not just with the parents; include the child in conversations about the illness of treatment; never talk over the child.
Understanding limitations Show consistence with restrictions placed on the child; clearly define these areas to the child and restate them with each encounter.
Preschool child Industry Allow for stimulating activity and independence with play; provide opportunities for success and accomplishment.
Increased self awareness Allow for display of fears and frustrations through drawing, storytelling, play; allow for verbalization.
Physiologic competency Promote continuance of increased motor skills, language skills, and control of body functions.
Further socialization Provide for participation in group games and interaction with children of the same age; encourage encounters with children in the hospital.
Independence Allow for independent decisions when possible.
School-aged child Positive body image Create situations for positive reinforcement of child’s self-image.
Stress side effects as temporary; provide ways to decrease effects of treatment.
Increased industry Allow for continuance of daily activities such as play and school.
Support situations for discovery and achievement.
Increased sensory perception Prevent occurrence of sensory loss when possible; provide opportunities during hospital stay for sensory awareness.
Independence Support child’s self-care and participation in treatment; provide times in which the child can function without significant others.
Awareness of world Allow for verbalization of the child’s perceptions of his or her world.
Encourage expression through play and artwork.
Adolescent Autonomy Support independence and provide means for autonomy in decision making; stress importance of this to parents.
Maintaining beliefs and values Honor beliefs and values; provide positive reinforcement in the development of the adolescent’s beliefs; allow the adolescent to express beliefs.
Enforcement of self-esteem Provide situations to reinforce self-esteem; always treat the adolescent with respect as a unique individual separate from the parents; strive to know the adolescent as a person.
Development of future goals Encourage development of future goals while assisting the adolescent in dealing realistically with the situation.
Achievement Stress importance of continued participation in education and other areas of continued improvement; assist in planning programs to meet the adolescent’s needs, realizing the limitations of the disease.
Adapted from Hockenberry MJ, Coody DK. Pediatric oncology and hematology: perspectives on care. St. Louis: Mosby, 1986.
Nurses must be knowledgeable regarding the long-term complications of specific chemotherapeutic agents.90 Toxicity related to therapy can result in long-term disability. Anthracyclines, which include doxorubicin (Adriamycin) and daunomycin, can produce irreversible cardiac damage.91,92 Cumulative doses of anthracyclines must be closely monitored by the nurse, and examination of left ventricular function should be ordered periodically as part of the overall medical management plan (see Chapter 49). Agents known to cause renal or bladder complications include cisplatin,

ifosfamide, and cyclophosphamide.93 Long-term kidney damage can occur with other agents as well. Nurses must be aware of these complications and should monitor the patient for signs of bladder toxicity such as hemorrhagic cystitis after cyclophosphamide therapy. Renal function should be evaluated by obtaining serum chemistry determinations on each return visit. Children who have undergone bone marrow transplantation have the potential for developing long-term pulmonary toxicities and must be evaluated periodically for signs and symptoms or respiratory compromise.94 These individuals should avoid tobacco products after transplantation and be treated aggressively for respiratory illnesses. The nurse should assess the patient for symptoms such as dyspnea, shortness of breath, cough, or fever. Chest radiographs and pulmonary function tests should be performed routinely in these individuals. Several agents, such as methotrexate, chlorambucil, 6-mercaptopurine, daunomycin, and doxorubicin, are associated with long-term liver toxicity.95 Nurses must be aware of the potential for development of hepatitis, hepatic fibrosis, and cirrhosis in these patients. Gastrointestinal toxicities are most frequently caused by combined chemotherapy and radiation therapy. Signs and symptoms include abdominal pain, nausea, vomiting, diarrhea, constipation, and gastrointestinal bleeding. Bone growth is usually not affected by chemotherapy alone; however, prolonged use of methotrexate and corticosteroid may cause osteoporosis, bone pain, and increased susceptibility to fractures.96 Nurses must be comprehensive in their assessment for musculoskeletal complications in children after treatment of cancer.
Nurses caring for survivors of cancer who received cranial irradiation and intrathecal methotrexate at a young age must be aware of the possible neurocognitive late effects associated with this treatment. Intellectual and motor function may be impaired because of interference with neural development before maturation of the brain is complete.97,98 Memory loss may occur in children receiving high doses of irradiation. Children younger than 3 years are at the highest risk of this complication.99,100 Assessment of these children must include an extensive neurologic evaluation that includes cognitive function. Nurses should assess school attendance and performance because problems with mathematics and reading may occur.
Radiation therapy can cause bone growth to cease and can decrease the function of reproductive glands responsible for manufacturing growth hormones.100,101,102 Nurses must document growth by assessing height and weight at each visit. Changes in growth velocity should be referred for further evaluation. Further assessment must include measuring parental heights, obtaining a radiograph of the patient’s left wrist to predict further growth potential, and assessing gonadal development and pituitary function. An endocrinologist should be consulted when abnormalities are found or are suspected.
Knowledge of the effects of radiation therapy and alkylating agents on hormonal function, fertility, and sterility is important for the nurse caring for the cancer survivor. The potential for gonadal dysfunction depends on the child’s age at the time of diagnosis, the child’s sex, the type of treatment, and the duration and total dose of treatment.101,102 Nursing assessment must include careful documentation of sexual development using the Tanner staging scale and a detailed history.
Survivors who have undergone radiation therapy to developing bone or cartilage need close observation of the irradiated bone to detect abnormalities such as spinal kyphosis or scoliosis, leg-length discrepancy, and skull or facial disfigurement. Because irradiated bones are more fragile, the survivor is at risk for bone fractures, often has functional limitations, and heals more slowly in the presence of infection. Osteoporosis may develop.96 Children who have received irradiation to the mandibular area are at risk for dental caries, arrested tooth development, and incomplete dental calcification. A complete assessment of the oral cavity at every clinic visit is essential in children who have received irradiation to the mandible.
Pediatric oncology nurses must continue to pursue ways to maintain their professional competence. Participation in professional organizations such as the Association of Pediatric Oncology Nurses (APON) ensures ongoing involvement in continuing education, professional development, and research. Pediatric oncology nursing certification is now available through Oncology Nursing Certification Corporation. Nurses who successfully pursue certification in pediatric oncology demonstrate a commitment to the specialty and obtain the credentials associated with specialization. Pediatric oncology nurses must continue to be committed to their colleagues as well as to the ongoing development of collaborative relationships. Through these relationships, the role of the nurse in pediatric oncology can be realized.
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