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Improvement in pediatric palliative and end-of-life care has been identified as an ongoing research priority. The child and parent experience provides valuable information to guide how health care professionals can improve the transition to end of life and the care provided to children and families during the vulnerable period. The purpose of this systematic review was to describe the experience of pediatric oncology patients and their parents during end of life, and identify gaps to be addressed with interventions. A literature search was completed using multiple databases, including CINAHL, PubMed, and PsycInfo. A total of 43 articles were included in the review. The analysis of the evidence revealed 5 themes: symptom prevalence and symptom management, parent and child perspectives of care, patterns of care, decision making, and parent and child outcomes of care. Guidelines for quality end-of-life care are needed. More research is needed to address methodological gaps that include the pediatric patient and their sibling's experience.

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An estimated 60% of pediatric oncology patients experience malnutrition during cancer therapy. Initiation of enteral nutrition (EN) and parenteral nutrition (PN) are interventions aimed at maintaining and promoting growth. Limited literature addressing perceptions of nutrition support methods exists. To develop effective guidelines on nutrition education, it is important to understand perceptions regarding nutrition support. The purpose of this pilot study was to describe perceptions of pediatric oncology patients and parents regarding the use of EN and PN and identify influencing variables. A convenience sample of pediatric oncology patients and parents were surveyed at a large Midwestern children's hospital. The majority of those surveyed chose PN over EN if they or their child were unable to eat or maintain their nutritional status. Perceptions may be influenced by comfort, ease of nutrition or medication administration, experience, health care team's recommendation, choice, and image. This study provides health care professionals an initial opportunity to understand perceptions of EN and PN, which may provide a foundation for a multi-institutional study and enhance patient and family education.

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Background Children with advanced cancer experience symptoms despite access to quality care. Symptom research has previously relied upon retrospective designs and parent proxy rather than prospective measurement with self-report. Objective This study evaluated the feasibility of electronic data collection in children with advanced cancer using self-report of symptom frequency, severity, and distress. Methods A multisite prospective cohort design was used for this study. Children who were 7 to 18 years of age and English-speaking and had a diagnosis of advanced cancer were included. Symptom frequency, severity, and level of distress were measured every 2 weeks. Results Forty-six children completed 563 of 622 (91%) administered electronic symptom assessments. Pain, fatigue, nausea, and sleeping difficulties were the most reported symptoms across all assessments and during the last 12 weeks of life. Symptoms with the highest composite scores included pain, fatigue, nausea, and sleeping difficulties. During the last 12 weeks of life, pain, fatigue, diarrhea, and sleeping difficulties had the highest composite scores. When the domains of frequency, severity, and distress were compared between groups, children reported significantly higher frequency of pain and eating difficulty during the last 12 weeks of life. Conclusions Electronic data collection is a feasible way to evaluate the constellation of symptoms. Children with advanced cancer continue to experience physical and psychological symptoms, especially during the last 12 weeks of life despite quality care. Implications for Practice Assessment of symptom domains, including frequency, severity, and distress when symptoms are present may allow clinicians to better understand and manage symptoms of most concern to the patient.

Enhancing nurse communication skills during EOL requires opportunities to gain experience coupled with clinical strategies, such as standardized curricula, simulation, competency-based orientation programs, mentorship, and peer support.