Stina Lou1, Maja Retpen Lanther2, Natascha Hagenstjerne2, Olav Bjørn Petersen3, Ida Vogel4. 1. DEFACTUM - Public Health & Health Services Research, Aarhus, Denmark; Center for Fetal Diagnostics, Aarhus University Hospital, Aarhus, Denmark. Electronic address: stina.lou@rm.dk. 2. DEFACTUM - Public Health & Health Services Research, Aarhus, Denmark. 3. Center for Fetal Diagnostics, Aarhus University Hospital, Aarhus, Denmark; Fetal Medicine Unit, Department of Obstetrics and Gynecology, Copenhagen University Hospital Rigshospitalet, Copenhagen, Denmark. 4. Center for Fetal Diagnostics, Aarhus University Hospital, Aarhus, Denmark; Department of Clinical Genetics, Aarhus University Hospital, Aarhus, Denmark.
Abstract
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.
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.