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This paper is based on data collected from two different studies of parents (76 mothers and 14 fathers) whose children had been diagnosed with cancer. Although the goal of the first study, to describe parental experiences when their children have cancer, was different than the goal of the second study, to describe the home health care work done by parents whose children had cancer, the themes outlined here were reiterated from study to study. In both sets of data conflicts in the dynamics of power, authority and knowledge were pivotal to the dilemmas experienced by parents in their interactions with health care staff both during the time of diagnosis and later during the treatments when their children had cancer. The paper points to the significance of fundamental social processes such as power, authority and knowledge in understand- ing and ameliorating parental experiences when a child has cancer. [ABSTRACT FROM AUTHOR]

Twenty-nine parents of children who had been diagnosed with cancer were interviewed through long and relatively unstructured interviews conducted via telephone by a mother whose own daughter once had cancer. Parents were asked to tell the story of their experiences during the time that they were 'going through' cancer. Parents usually began their narrative in the months, weeks, or days prior to the diagnosis. They spoke of various parts of the story. In this paper, the focus is on one topic that parents talked about a lot. We call this 'problems with the system' or 'surplus suffering.' Here parents reported on their perceptions of mistakes, and delays in diagnosis, errors, carelessness, and unkindness during treatment. They talked of how they felt they had to be on constant guard, and at times, to intervene in their child's care. This paper provides a picture of parental expectations and their violation during the treatment of their children for cancer. It begins to demonstrate how parents see themselves as advocates for their children in a context of fragile power relations. [ABSTRACT FROM AUTHOR]