A Qualitative Study of Parental Decision-Making Following a Prenatal Diagnosis of Turner Syndrome: "How Serious Is This?"

A prenatal diagnosis of Turner syndrome (TS) presents expectant parents with complex and emotionally demanding decisions under conditions of uncertainty. However, there is limited insight into how parents interpret and integrate medical information, personal experiences, and values during this process. This qualitative study explores how parents who chose to continue a pregnancy following a prenatal TS diagnosis experienced and navigated decision-making. The study was conducted within the Danish healthcare system between September 2024 and October 2025. During this period, we conducted 12 semi-structured interviews with 19 parents of girls diagnosed prenatally with TS (seven joint interviews with both parents and five interviews with the mother only). Interviews were audio-recorded, transcribed verbatim, and analyzed using reflexive thematic analysis. Across interviews, parents repeatedly returned to the question, "How serious is this?", and our analysis showed that decision-making unfolded as a dynamic, evolving process rather than a single point of choice. This process was captured through five interrelated themes: The crisis of diagnosis; What parents bring into decision-making; Contrasting images of Turner syndrome; What kind of life is possible?; and The turning point. These themes illustrate how assessments of seriousness were shaped through an interplay of prior experiences, emerging attachment to the fetus, ultrasound findings, counseling encounters, and social responses. Over time, parents developed a more coherent understanding of the diagnosis, culminating in the decision to continue the pregnancy. In this way, decision-making following a prenatal TS diagnosis extended beyond the evaluation of medical information and involved substantial interpretative and emotional work. Clinical encounters were most meaningful when information was contextualized and aligned with parents' concerns about everyday life and future possibilities. These findings reinforce the importance of prenatal counseling that integrates medical information with support for the interpretative and emotional work through which parents make sense of the diagnosis and navigate uncertainty.