Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses
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J Pediatr Oncol Nurs · May 2004
ReviewPediatric cancer research from past successes through collaboration to future transdisciplinary research.
Multidisciplinary collaboration in therapeutic research in childhood cancer has been responsible for enormous improvements in outcomes. Many of the improvements have resulted from large clinical trials carried out in multisite settings through the Children's Oncology Group (COG) and its predecessors, the Children's Cancer Group, the Pediatric Oncology Group, the National Wilms' Tumor Study, and Intergroup Rhabdomyosarcoma Study Groups. ⋯ However more can be done to improve both survival rates and the quality of survival. Areas that can benefit from a transdisciplinary model of research are discussed, as well as challenges to this form of collaboration.
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Approximately 2,200 children and adolescents die a cancer-related death each year in the United States; of these, almost 90% will die while experiencing 2 to 8 troubling symptoms. With improved symptom control and end-of-life care, these patients might suffer less before they die and their survivors might experience fewer or less intense adverse physical and mental conditions secondary to their bereavement. ⋯ Knowing the characteristics of cancer-related deaths in children and adolescents will help researchers and clinicians develop and test effective interventions related to symptom management, decision making, and availability of care delivery models that match the dying child's needs and preferences. Such interventions could also contribute to the highest quality and cost-effective care being provided to the bereaved survivors.
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J Pediatr Oncol Nurs · Jul 2002
Comparative StudyParents' views of their children's participation in phase I oncology clinical trials.
Data from two descriptive studies regarding decision making in pediatric oncology were analyzed using qualitative, secondary analysis techniques to describe how parents view their children's participation in phase I oncology clinical trials. A conceptual framework on family management styles (defining, managing, and consequence themes) was used as an organizational framework to analyze the available parental data. Parents defined or viewed their situation in relationship to their choices and expectations, health care provider expectations, children's illness situation, and family and personal situations. These themes are contrasted to clinical, parental, and ethical perspectives from the literature to make recommendations for further research emphasizing the concerns of families.