Peer-reviewed article
A Qualitative Study of Parental Decision-Making Following a Prenatal Diagnosis of Turner Syndrome: "How Serious Is This?"
Dorf ILH, Lou S, Baggesgaard CMB, Naeraa RW, Hagen CP et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study explores how parents in Denmark who continued pregnancies after prenatal Turner syndrome diagnoses made their decisions. The research involved interviews with 19 parents and found that decision-making was a dynamic process shaped by medical information, emotional attachment, and social responses. Parents repeatedly asked 'How serious is this?' as they developed understanding of the diagnosis. The study emphasizes the importance of counseling that contextualizes medical information within parents' concerns about daily life and future possibilities.
Key points
- Decision-making following prenatal Turner syndrome diagnosis is a dynamic, evolving process rather than a single point of choice
- Parents' assessments of disease seriousness were shaped by prior experiences, fetal attachment, ultrasound findings, counseling, and social responses
- Five interrelated themes emerged: crisis of diagnosis, what parents bring to decision-making, contrasting images of Turner syndrome, what kind of life is possible, and the turning point
- Clinical encounters were most meaningful when information was contextualized and aligned with parents' concerns about everyday life
- Decision-making involved substantial interpretative and emotional work beyond evaluation of medical information
Limitations
This study focuses on parents who chose to continue pregnancies and does not include perspectives of parents who chose termination, limiting understanding of the full range of decision-making processes. The research is also specific to the Danish healthcare system and may not generalize to other contexts.
Abstract
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.