Parental experiences after prenatal diagnosis of fetal abnormality Jan Hodgson a, b, * , Belinda J. McClaren a, b a Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia b Genetics Education and Health Research, Murdoch Children's Research Institute, Parkville, Victoria, Australia Keywords: Prenatal screening Prenatal diagnosis Informed decision-making Fetal abnormality abstract For many pregnant women, prenatal testing is a routine component of contemporary pregnancy care. Receiving a prenatal diagnosis is frequently associated with intense feelings of shock and grief; the extent of which may be unrelated to the pregnancy gestation or the condition diagnosed. During this time of crisis, parents are often faced with important choices about their pregnancy. Levels of understanding and experiences of professional support throughout this time likely impact decisions that are made and how they are subsequently perceived. Despite considerable advances in prenatal testing technologies over the last 20 years there is a paucity of research examining parental experiences in-depth. Future advances such as prenatal exome sequencing will further increase the scope of prenatal testing and numbers of parents who receive a prenatal diagnosis. It is imperative that large-scale studies are performed to ensure that protocols are in place to adequately support couples at this time. © 2017 Elsevier Ltd. All rights reserved. 1. Introduction Until the twentieth century, pregnancy and childbirth were seen exclusively as “lay” and “female” domains and medical in- terventions were rare. Over time these “natural” processes have become increasingly medicalized with a corresponding welcome decline in maternal and fetal mortality [1,2]. As advances in tech- nology have continually improved our ability to closely scrutinize a developing fetus, prenatal testing has evolved into a seemingly routine component of contemporary pregnancy care. A compre- hensive audit of prenatal testing trends over 38 years in the State of Victoria, Australia, was recently reported [3]; the review period encompassed the initial availability of only invasive testing (amniocentesis or CVS), then the introduction of second trimester maternal serum screening followed by the availability of combined first trimester screening and more recently maternal plasma cell- free DNA. It clearly demonstrates that rates of invasive testing procedures have declined over time and, with the uptake of newer technologies, that diagnostic yield has greatly improved. However, it is only for a minority of situations that a prenatal diagnosis provides an opportunity for treatment or intervention to rectify the condition it identifies. For most parents, receiving a prenatal diagnosis of a fetal ab- normality is usually the beginning of a highly emotional and morally challenging process requiring assimilation of complex in- formation and contemplation of possibly previously unconsidered concepts such as disability. Whereas knowledge gained from pre- natal testing may provide an opportunity to prepare for the birth of a child with additional needs, depending on local laws parents may also choose whether they wish to continue the pregnancy or have an abortion. This review investigates parents' experiences following a pre- natal diagnosis, how they make decisions about continuing or ending their pregnancy, and how practitioners can best provide support throughout this time. 2. Receiving the diagnosis Hearing about a suspected anomaly is acutely distressing, and emotional responses may have ongoing impact for the pregnant couple and their relationship as well as their perception of their pregnancy [4]. Receiving a prenatal diagnosis is often experienced as unexpected and shocking [5e10], regardless of the pregnancy gestation, length of time involved and perceived severity of the anomaly [11,12]. Parents frequently experience acute grief re- sponses and strong emotions of guilt, anger, and loss [8,13e15]. In addition to these acute responses, prenatal diagnosis may trigger a shift over time from ‘hope’ to ‘despair’ [16] and a change in parental status and expectations, described as a ‘new life trajectory’ [6,9]. It * Corresponding author. Murdoch Children's Research Institute, 5th Floor West, Royal Children's Hospital, 50 Flemington Road, Parkville, Victoria 3052, Australia. E-mail address: hodgson@unimelb.edu.au (J. Hodgson). Contents lists available at ScienceDirect Seminars in Fetal & Neonatal Medicine journal homepage: www.elsevier.com/locate/siny https://doi.org/10.1016/j.siny.2017.11.009 1744-165X/© 2017 Elsevier Ltd. All rights reserved. Seminars in Fetal & Neonatal Medicine xxx (2017) 1e5 Please cite this article in press as: Hodgson J, McClaren BJ, Parental experiences after prenatal diagnosis of fetal abnormality, Seminars in Fetal & Neonatal Medicine (2017), https://doi.org/10.1016/j.siny.2017.11.009