Receiving a prenatal diagnosis of Down syndrome by phone: a qualitative study of the experiences of pregnant couples

OBJECTIVES: To examine how pregnant couples experience receiving a prenatal diagnosis of Down syndrome (DS) by phone—a practice that has been routine care in the Central Denmark Region for years. DESIGN: Qualitative interview study. SETTING: Participants were recruited from hospitals in Central Denmark Region, Denmark. PARTICIPANTS: Couples who had received a prenatal diagnosis of DS by phone and decided to terminate the pregnancy. They were recruited from the obstetric department where the termination was undertaken. During the study period (February 2016 to July 2017), 21 semistructured, audio-recorded interviews were conducted by an experienced anthropologist. Interviews were conducted 4–22 weeks after the diagnosis and analysed using thematic analysis. RESULTS: A prearranged phone call was considered an acceptable practice. However, the first theme ’Expected but unexpected' shows how the call often came earlier than expected. Consequently, most women were not with their partner and were thus initially alone with their grief and furthermore responsible for informing their partner, which some considered difficult. The second theme ’Now what?' shows how during the phone calls, physicians were quick to enquire about the couples’ agendas. As the majority had already decided to seek termination of pregnancy, the dialogue focused on related questions and arrangements. Only half of the couples received additional counselling. CONCLUSION: A prearranged phone call was considered an acceptable and appropriate practice. However, some aspects of this practice (particularly related to the context of the call) showed to be less than optimal for the couples. To make sure that a diagnostic result is delivered in accordance with the couples' needs and requests, the context of the call could be addressed and agreed on in advance by physicians and couples.