Narratives of ethical distress of nurses supporting decision-making in terminally ill children with cancer

Abstract

The purpose of this study was to identify the ethical distress experienced by nurses who support the decision-making of children with cancer in the terminal phase. Semi-structured interviews were conducted with nine nurses. Narrative research methods were used to perform thematic and structural analyses of the interview content. As a result, six narrative structures and narrative characteristics were identified by the structural analysis. Nine themes of ethical distress, five themes related to decision-making, thirteen actions the nurses thought about taking, and seventeen obstacles to action were identified by the thematic analysis. A characteristic of the interviews was that the nurses were hesitant when talking about ethical distress, choosing their words carefully and talking about their own actions. Even though the nurses were aware of the need to confirm or explain a child’s wishes, they had ethical distress due to obstacle to action. These results suggest that for the nurses, vacillating and worrying together with the children and their families while continuing to confront their ethical distress may aid in their development as nurses.