Communication issues faced by parents who have a child diagnosed with cancer.

Abstract

Twenty-nine parents of children who had been diagnosed with various cancers were interviewed through long, semistructured interviews conducted via telephone by a mother whose daughter once had cancer. Parents usually began their narratives of the defining moments in the months, weeks, or days prior to the diagnosis. The authors report on parents' views about one of the defining moments in the stories. At the first level, we call this "communication issues" and include the following topics: communication at diagnosis, contradictions and confusion, getting the "right" amount of information, good and poor communication, feeling listened to, and errors in medical information. At another level, the way that parents talk about communications issues reflects an underlying paradox that parents whose children have cancer face: They are and feel responsible for their children, and yet they often lack knowledge, authority, and power in their dealings with the health care system and its medical care providers.