Narrative Inquiry in Bioethics

Abstract:

Decisions on the clinical management of children with an intersex condition heavily depend on the kind of information parents receive from healthcare professionals. This paper aims to explore this influence by analyzing the stories of parents and care providers. The presented data come from 19 semi-structured interviews with parents of intersex children and healthcare professionals specializing in intersex conditions in Switzerland and Germany. Arthur Frank’s narrative framework was used to analyze the stories and sort out which kind of cultural threads were available to participants to make sense of their experience. Although many healthcare providers discouraged early genitoplasty, they believed that the decision not to operate required unique parenting skills, which few parents possess. This vision was shared by the parents in our sample. Some parents also projected this specialness upon their children, viewing the condition as a special gift, and as a possibility of personal growth.