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Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must understand the multiple dimensions of the person who suffers and the complex set of relationships within the natural and the clinical social networks. Pediatric oncology research must include appropriately designed studies with sound methodology and measurement strategies to test and refine theories that account for the link between human relationships and the relief of suffering. Studies should assess as many theoretical models as possible, including the social network, perceptions of support, and provider-recipient interactions; their physical, emotional, behavioral, and spiritual concomitants; and their impact on medical decision making and health outcomes. Future directions in pediatric end-of-life care research must also include evaluating social and spiritual interventions developed on the basis of solid hypotheses regarding the positive and negative influences of interpersonal dynamics on the processes that mediate between suffering and well-being.

Journal of Patient-Centered Research and Reviews (JPCRR) is an open access, peer-reviewed medical journal focused on disseminating scholarly works devoted to improving patient-centered care practices, health outcomes, and the patient experience. www.aurora.org/jpcrr 243 Original Research Purpose Caring for a child with cancer or hematologic disease places unique stress on a family unit. Families' subjective experience of this care-related burden mediates the relationship between cost and healthrelated outcomes. While financial costs are well described for families of pediatric hematology/ oncology patients, it is unclear how cost and other factors each contribute to families' overall experience of care-related burden. This study identifies and groups the challenges that families report and describes their association with overall reported burden. Methods This mixed-methods analysis of a cross-sectional single-center study was conducted via structured, self-administered questionnaire provided to inpatient and outpatient caregivers of pediatric hematology/ oncology patients. Respondents rated their perception of burden associated with that day's medical encounter on a 5-point Likert scale. The questionnaire included an open-ended prompt for caregivers about areas they deemed most burdensome. Primary themes were extracted and categorized. Results A total of 278 outpatient and 42 inpatient caregivers participated. Six thematic categories emerged: logistics, life disruption, care delivery system, parking, financial burden, and emotional burden. Outpatient caregivers reported more burden than inpatient caregivers for the first three categories, while inpatient caregivers reported more burden for the last three. Salient subthemes associated with higher and lower overall burden were identified in each theme category. Conclusions These data establish theme categories for future study of caregiver-perceived burden in pediatric hematologic/oncologic encounters, demonstrate that certain components of cost contribute disproportionately to caregivers' overall sense of care-related burden, and identify areas within each of the 6 burden categories that can be best targeted to alleviate caregiver burden.

Although there have been major advances in the treatment of childhood cancer with an overall survival rate of more than 70%, cancer continues to be the leading cause of death in children resulting from disease. In 1998, 2,500 children in the United States died of cancer-related causes. Each year cancer kills more children than asthma, diabetes, cystic fibrosis, congenital anomalies, and acquired immunodeficiency syndrome combined. The Association of Pediatric Oncology Nurses (APON) is the leading professional organization for nurses caring for children and adolescents with cancer and their families. The highest standards of nursing practice are achieved through education, research, certification, advocacy, and affiliation. It is the position of APON that pain in the child dying of cancer can be effectively managed. This can be accomplished by making the prevention and alleviation of pain a primary goal, partnering with the patient and parents, and aggressively using appropriate pharmacologic and non-pharmacologic interventions. The pediatric oncology nurse has an essential role in the child's pain management at the end of life through nursing assessment, identifying expected outcomes, and performing and evaluating interventions.