"This is the child we were given": A qualitative study of Danish parents' experiences of a prenatal Down syndrome diagnosis and their decision to continue the pregnancy.

OBJECTIVES: Termination rates when Down syndrome (DS) is diagnosed prenatally are high in most countries. Thus, the present study aimed to explore how parents of prenatally diagnosed children with DS experienced the diagnostic process and their decision to continue the pregnancy. METHODS: Data from a semi-structured, qualitative interview study with eight mothers and five fathers of prenatally diagnosed children with DS born between 2008 and 2017 were analyzed using thematic analysis. FINDINGS: Several couples emphasized how they had not hoped for a child with DS, but following the diagnosis they strongly felt that this was the child that they "were given." The couples stressed that DS was not the worst that could happen. All couples sought experiential knowledge outside the hospital setting to explore the potential for living a fulfilling life with DS. Five couples had positive recollections of the delivery of the DS result. Three couples had negative recollections, mainly because the intention to terminate had been taken for granted. After the decision to continue pregnancy was made, their interaction with health-care professionals was generally experienced as positive and supporting. However, some couples still felt vulnerable because they were aware that their decision was uncommon. CONCLUSIONS: Health-care professionals must be careful to speak in unprejudiced ways throughout the diagnostic process and present both termination and continuation of pregnancy as equally legitimate options. Nevertheless, the couples may still experience doubt and feel vulnerable following their decision to continue the pregnancy.

Termination of pregnancy following a prenatal diagnosis of Down syndrome: A qualitative study of the decision-making process of pregnant couples.

INTRODUCTION: 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.