Open AccessTermination of pregnancy following a prenatal diagnosis of Down syndrome: A qualitative study of the decision‐making process of pregnant couples
Author(s) -
Lou Stina,
Carstensen Kathrine,
Petersen Olav Bjørn,
Nielsen Camilla Palmhøj,
Hvidman Lone,
Lanther Maja Retpen,
Vogel Ida
Publication year - 2018
Publication title -
acta obstetricia et gynecologica scandinavica
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.401
H-Index - 102
eISSN - 1600-0412
pISSN - 0001-6349
DOI - 10.1111/aogs.13386
Subject(s) - regret , medicine , pregnancy , thematic analysis , prenatal diagnosis , down syndrome , decision making , decision analysis , qualitative research , family medicine , obstetrics , psychiatry , fetus , social science , operations management , genetics , statistics , mathematics , machine learning , sociology , purchasing , computer science , economics , biology
In Denmark, first trimester screening has a very high uptake (>90%). If Down syndrome is diagnosed, termination rates are high (>95%). The aim of this study was to investigate the timing of the decision to terminate pregnancy following a diagnosis of Down syndrome and the factors influencing this decision. Material and methods Semi‐structured, qualitative interview study with 21 couples who had received a prenatal diagnosis of Down syndrome and decided to terminate the pregnancy. Participants were recruited from obstetric departments between February 2016 and July 2017. Data were analyzed using thematic analysis. Results Five themes were identified: “initial decision‐making”, “consolidating the decision”, “reasons and concerns shaping the termination of pregnancy decision”, “the right decision is also burdensome”, and “perceived influences in decision‐making”. For most couples, the initial decision to terminate pregnancy was made before or during the diagnostic process, but it was re‐addressed and consolidated following the actual diagnosis. Imagining a family future with a severely affected Down syndrome child was the main factor influencing the termination of pregnancy decision. The decision was articulated as “right” but also as existentially burdensome for some, due to fear of regret and concern about ending a potential life. The decision to terminate pregnancy was considered a private matter between the couple, but was refined through interactions with clinicians and social networks. Conclusion All couples made an initial decision prior to receiving the Down syndrome diagnosis. Knowledge of the couple's initial decision may facilitate patient‐centered communication during and after the diagnostic process. Couples may benefit from counseling to deal with grief and existential concerns.