Parents' views of their children's participation in phase I oncology clinical trials

Abstract

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.