Parental experience of the diagnostic process and its role in the decision to terminate pregnancy due to fetal abnormality; A qualitative interview study

Abstract

Introduction The detection of fetal malformation is a shock to expectant parents and often initiates a diagnostic process of additional tests and ultrasound scans, that may be uncertain and stressful to the parents. The aim of the present study was to investigate how expectant parents experienced the diagnostic process and how their decision to terminate the pregnancy was reached during that process. Methods Semi-structured interviews with 11 Danish women and nine male partners one to five months after termination of pregnancy. All interviews were conducted in the participants’ homes and lasted 97–135 minutes. Thematic analysis was performed. Results 1) The theme, ‘In no man’s land’, describes the two-phased diagnostic process: First, the initial shock of a potential ultrasound finding, and the uncertain – but still hopeful – days of waiting for a follow-up scan and specialist consultation. Second, the feeling of professionalism and companionship when interacting with the fetal medicine specialists, who still could not always provide the hoped-for answers. 2) The theme, ‘Inescapable decision’, describes how decision-making oscillated as new information or potential interpretations entered the diagnostic process. The participants described a continuous contemplation of the inevitable final choice regarding continuation or termination. Being in this process – for days or weeks – was described as an emotional rollercoaster with feelings of both hope and despair until the final decision to terminate was made. Conclusion During a prenatal diagnostic process parents must endure uncertainty, waiting times and an ongoing oscillation between hope and no-hope for the pregnancy. However, the diagnostic process may also be understood as an opportunity for dialogue, reflection and adjustment, allowing for a personal and well-considered decision, even if painful.